#rarediseaseday challenge – Day 28: RARE DISEASE DAY!

#rarediseaseday challenge – Day 28: RARE DISEASE DAY!

So everyone will have seen me posting about hospital this, infection that… Toe dying this, massive amount of drugs, something medical blah… And yep, it can get easy to skim past or ignore it all and think “nothing new, moving on, memes to read…”

Personally, I don’t know yet if I have a rare disease. Which may confuse you, but what is happening to me isn’t proving easy to diagnose. And believe me, my Doctors have taken many many many vials of blood and mri scans and xrays and chunks of flesh… My toes and fingers are essentially trying to die because my blood is too thick and my body has decided it doesn’t like my small blood vessels… or my blood. They don’t know yet. I am bloody lucky it hasn’t yet progressed to my other organs – kidneys being the likely next step.

What they can say is that it at least very closely mimics symptoms of small vessel vasculitis (they are now currently calling it ‘livedoid vasculitis’!). I had never heard of this condition before being advised that it looked like I had a really rare variant in approx. March 2016. By this point I had been really unwell for about 18 months already. So I got googling. Turns out its a group of super flippin’ rare auto-immune diseases where your body attacks your blood vessels. For funsies obv. I started learning about it as fast as possible, because knowledge felt like control and I really badly needed some illusion of that. My diagnosis has since become a little more vague due to my failure to abide by the rules regarding blood tests… But regardless of what variant or cross-over or mimic I actually have, Vasculitis UK have saved my mental and physical bacon.

To learn more about the volunteer run charity and the disease itself, please go to http://www.vasculitis.org.uk

Vasculitis UK have been a wonderful, crazy and understanding family from day one. Someone is online at any hour of the day or night due to all of our inability to sleep (pain or meds) and they have all been so incredibly tolerant of my rather madcap approach to life and chronic illness. They gave me a hefty kick to seek proper consultant advice – as regardless of best intentions, unless you are a specialist, vasculitis is simply too rare to be able to diagnose, make judgement calls safely or even get funding approved for the more exciting drugs.

I’ve now had quite a few exciting drugs. The most recent being cyclophosphamide, a chemotherapy drug that I spent many many months fighting to avoid having to take. I was too ill and medically weird though, so whilst having my second batch of five days of plasma exchange in three months, I was told it was chemo crunch time. Toes and fingers and kidneys vs. future babies and hair falling out and feeling pukey and crap… Since the start of October 2016 I have spent maybe four months in three different hospitals. The vast majority of people I have met through Vasculitis UK have had more than one round of chemo. Some are frequent flyers! It upsets and frustrates me to the point of tears that the general public and media perception of chemo is as a cancer treament: it is used SO much more widely than that.

So that is my message for this #rarediseaseday – CHEMO IS NOT JUST FOR CANCER.

If you are ridiculous enough to be offended by that, firstly please go google it and then either apologise to my hair that is falling out and make a donation to Vasculitis UK or unfriend me and walk away. I don’t need ignorant judgemental people in my life 😉 Donations can be made to the below page, where my awesome little brother and his buddies are running for Vasculitis UK and all of the amazing work they do and research they support. ‘K bye xx

justgiving – Connor & Co. running for Vasculitis UK

Xmas is over! A new year has begun! ***Icky toe pic be warned!!*** Kath goes back to Wolf Town… and manages to be in A&E AND ADMITTED TO HOSPITAL – WTF!!! – only a week into 2017 – and it isn’t even Death Toe’s fault!!! 😮 Everyone meet FESTER!!!

 

 

My return home from Scotland was a slightly less stressy affair than my trip north had been… The car got loaded with all my xmas booty, the volume of which horrified Dad – and my post xmas booty 😄 (thanks cheesecake) and Dad wasn’t being tipsy and fiddling with the radio… I got a chai latte as well at Annadale 😄 Good times.

Within a few hours of getting in, Mum single-handedly annihilated Christmas, taking down the tree in a scary blitz of late night anti-festivity that I hope was therapeutic in some way… It amused and scared me in equal measures. It took the girls and I six days to erect that masterpiece and maybe an hour for her to remove all evidence, except a drifting of needles 😕

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Christmas beauty 2016

She did comment on how SOME of  my bauble choices were tasteful… It made me both suspicious and warm and glowy to hear her say that. Normally she says very mean things about my colour coordinating and style choices!! Each year I add a few to my collection, something we did at home always, picking one each. Last year I didn’t ‘tree’ because I was sulking (2015) and this year I was in hospital for eight weeks beforehand. This made me go into a delirious morphine induced Christmas frenzy and I got loads and loads of awesome baubles. My faves were Button Guys 😄😄 Mum even approved!!

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Button Guys!!!

So being home again post-Xmas was lovely, but parents were sticking around for a few days to do a lot of work on my house – I got to see it! – the bathroom is getting some serious attacking and we variously spent hours either wiring and doing actual hands on house stuff (guess who didn’t do that bit 😀 ), or perusing catalogues for towel rails, baths, sink and toilets… I am very much under a fairly aggressive eviction notice, which is verbally reinforced several times a day with comments about how colourful all of my crap is 😀

Why Wolf Town? Fave finally made herself an etsy site 😀  Wolf Town Art I was loving all of her arty bits and bobs before xmas/whilst in hospital before and showed y’all a fair few – and she hasn’t yet stuck up a lot on her etsy site (I will work on this………) but the name ‘Wolf Town Art’ is  based on the history of our town and its a tale that has instigated quite a few magical flights of fancy down imagination motorway 😀

I came back very excited about seeing friends again after Christmas – and a bit more thoroughly, as before Christmas I’d been quite wacked from coming out of hospital and was fairly useless at seeing people. I had all sorts of civilised things planned in my mind and was spending the weekend first with parents doing gentle bathroom picking etc. Choosing a bath is horrifically hard by the way. I can understand why people walk into B&Q, point at one and walk out. I found this particular description on a website which massively tickled me though. They probably assume no one reads the descriptions, but I do and this is why 😀

“A simplified bathing solution from Trojan is ready to rock your bathroom in the form of Derwent Single-ended Bath. This sensational bathroom element would be an ideal choice, as it not just enhances the aesthetic value of your bathroom but also fulfils your practical needs with its superior strength. It exudes immeasurable opulence to the bathroom and promises to deliver great bathing pleasure like never before.”

Ehhh yeahh 😀 Who wouldn’t want immeasurable opulence in their bathroom? 😀

Anyway, my social, life dunking plan all went to crap… I was getting rather knackered last few days in Scotland to the point where I wasn’t doing much and then slept the whole way back in the car :/ Then I was increasingly stiff and sore when back at home and was struggling to stay awake, getting irritable about everything and avoiding family feeding fests because of everyone having the plague. I turned down a shopping day out because I was wiped out and would have ruined it for Mum and Auntie as well – that should have probably had everyone on red alert haha 😀

GROSS PIC A BIT BELOW… YOU HAVE BEEN WARNED!!

So Sunday we had planned that I would see friends for the first time and I got Inside Friend round for food and got a proper good catch up…. THEN! I had her hiding in the kitchen because she hates feet… Was redressing Death Toe (still very dead)… and sodding big toe next to Death Toe has a sodding ulcer. Ohhhh yes. Had a poke and we have pus ladies and gents, we have pus!! This toe was previously infected last December and eventually calmed down right about the point Death Toe was born. The ulcer is the small dark hole to the top corner of the nail. This may look fairly insignificant, but not when you have had at least seven infected toes start off like this previously and one of them then decide to die, all just for shits and giggles. The pus (because you are all dying to know) oozed out of the scabby area to the right of my big toe, which is where the previous ulcer was and is clearly where the skin is still thin and damaged. It had that creepy hollow toe feeling going on as well when I got some of the gunk out 😦   But yep. I have called him Fester. Took a family photo of him next to Death Toe and baby Voldetoe. Who is still painful and unchanged and ischaemic. The only one missing is their cousin ‘stupid sore ulcery patch on side of foot guy’ who needs a catchier name :/ Please excuse how yellow naked Death Toe is. This pic was taken at a delicate moment between dressings, with one of the nurses giving him a bed bath moments later to clean off some of the iodine.

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Anyway. After seeing this and swearing my head off, I wasn’t sure quite what to do, as yes I know I am immunocompromised, but didn’t want to overreact and wasn’t sure if e.g. starting the fluclox I had in the cupboard was an ok option and then wait until the morning for emergency GP appointment. I got a few metres down the road to Fave’s, watched the first few moments of a film and in the meantime was seeking some advice to see how much I needed to overreact. Overwhelming consensus was that with me being triply immunosuppressed (rituximab, prednisolone daily for a good few months now and having had plasma exchange) that any sign of infection meant A&E time. 111 agreed and I had a bloody good weep, threw some stuff in a bag and went to A&E. Regarding the fluclox, ‘normal’ people could do this without causing any harm… But I have had so many infections and speed is a little too much of the essence for them to waste it on an inappropriate antibiotic for the type of infection AND it can mask the blood test results as well! So yes, if you are in a similar situation DON’T take any antibiotics you have at home, go and get swabbed and get blood tests so they can target it appropriately!! The only ‘nice’ thing about this entire situation and the first thought that went through the background voice in my head behind the swearing, was that it at least explained why I had been so ridiculously tired and crap. I am waiting for the rituximab to start working so I can be frolicking in the daisies and skipping to the park to host hoop festivals and glitter orgies… So feeling excessively tired and sore and it worsening and not knowing why was alarming me. At least now I know the why!!

Dad was still around and did a late night drive to take me to A&E. A&E docs agreed I was very right to have gone in… and then admitted me, eventually. They were gonna send me home with oral antibiotics as SURPRISE SURPRISE! – temp hadn’t risen and bloods didn’t show anything too exciting, but when I pointed out that the same had happened with Death Toe up until it being… Death Toe! and that I literally NEVER spike a temp, no matter how infected, the on call medical doc came and had a nosy at both toe and notes (making repeated shocked and disgusted ‘oh my gosh’ noises the whole time haha!!) and he got me admitted pretty much instantly with a load of bags of iv clindamycin planned. I was on the same ward I was on for weeks last time, for the whole of Monday from about 6am until 8pm ish and then went down to the Gynae ward (the one I was on until I was swooped away to Addenbrookes by Supermum). I have had about… eight bags of antibiotics so far and have been absolutely shattered and my toes PLURAL are sore and shitty and I am rather fed up. I have absolutely no idea how long I’m in for. Blood results don’t show anything too exciting but pretty much all of my records on file here will have been taken when I was dealing with infected digits – and having spoken to GP, apparently the results here only show what is on hospital records and not the ones on my GP records!! (Although this is apparently due to change with some fancy new electronic business being introduced…)

So I am now wondering exactly what they are looking at, as the bloods I can see on Patient Access go back to 2011 (pretty good baseline seeing as how I wasn’t ‘ill’ until 2014). My liver function results (as graphed) went slowly up and up since early summer 2016 and then absolutely rocketed up around the end of August, a few weeks before I was urgently admitted to hospital and kept in for eight weeks. Saw my normal rheumy consultant yesterday – she tracked me down and got a whole load of tests and cultures and xrays organised to check exactly what other hidden infected business is going on. Today, after being on the new ward, I saw The Three Musketeers (of previous post fame – rest of the Rheumy Team). I am personally worrying that my general blood test trends could be due to the vasculitis and not the medication, but have given up trying to raise anything like this with The Three Musketeers now and will just wait and see if I can see my specific Dr again tomorrow and if not, meh. Just die of exploding liver disease I suppose! All three – to varying extents to be fair! – were incredibly defensive and dismissive of me having gone to Addenbrookes and pooh poohed the fact that Addenbrookes hadn’t given me a diagnosis beyond undifferentiated small vessel vasculitis… The fact it was suspected CPAN and they couldn’t do the biopsy so that I didn’t bleed to death was loudly ignored… and they were also quite scathing about the fact I had an infection – ‘well that’s what comes of you being immunocompromised’ as if this was solely due to the rituximab and plasma exchange that I had when I was down there! If memory serves they had wanted to wipe me out with cyclophosphamide and I have quite clearly got an issue with these ulcers, what with it being the eighth one at least in two years! Really wish my Dr didn’t work at different clinics 😦 There is a lot to be said for having consistency at least and I know I was under a lot of stress and ill and tired etc., but I still can’t get past that day I was woken up to all three of them looming around my bed and how much bollocks one of them in particular told me about plasma exchange. I have been poking around at my blood tests too much anyway. There are many many many causes of stupid liver results; medications that could be doing it all stopped as of today (omeprazole taken off the cards!) and the fact I am itchy as hell since before xmas has been raised, loudly, several times. So if I die of itching or related exploding liver you can all happily blame my consultant. More bloods were done today so if I am still horribly deranged in a livery sense then maybe it will be time to become a complete pest and demand a liver scan…

I finally requested my hospital records in full 🙂 Sent of £10 cheque and am waiting for a horrible invoice for the paper copy haha! Will be worth it to go through and have a tidy. My GP records on Patient Access revealed that back in 2015 – without my knowledge! – I was smoking 15 cigs a day haha 😀 I may have maybe, once or twice, smoked a rolly at the weekend whilst drinking but I have never regularly smoked when not intoxicated and I honestly think I would puke at 15 😀 I sorted that out whilst on the phone, along with the lump in breast from a huge cyst I had had when I was about 11 being a ‘current issue’… and hearing loss being a current issue! It may be a teeny tiny problem, especially in right ear, but it is from being a premature baby with underdeveloped inner ear bitties and is in no way significant enough to be ‘hearing loss’ under current problems 😀 Unless you are near Dad. And then everyone has hearing loss. BECAUSE HE MUMBLES HIS WORDS VERY QUIETLY AND DOES NOT PROJECT HIS VOICE TO THE BACK SEAT OF THE CAR OR TO THE OTHER SIDE OF THE TABLE. Just sayin’…..

Anyway. Back nearer the beginning. I shat all over film night by firstly being on the phone to support group (Thanks!!!) and then 111… and then crying all over the place… and then going off to A&E. Then I’m in here the evening I was going to get to see one of my buddies who works stupidly long hours and I haven’t seen her properly for so long 😦 and was gonna spend today doing arty farty stuffs with Fave. I noticed a lot over holidays how much being tired and ill has changed the level of people and stuff I can handle. I don’t deal well with overlapping or clattery noises for example and being back in hospital, part of me wonders if that is what triggered that off so badly. The lady I was next to upstairs yesterday was… very tough. She appeared to have no short term memory basically and in the few hours before I moved downstairs must have asked me about 100 times what time it was, when someone was coming to take her to the toilet or to help her get dressed for the day or what day of the week it was. It was the evening for one thing and she was already dressed… and she had been to the loo so so many times as she had a urine infection that was making her THINK she needed to pee when she didn’t 😦 The other ladies were much quieter than my usual cohorts from last time, but she more than made up for it  >.<  I was definitely not long off pulling curtains round me and feigning severe hearing loss!!! Dad witnessed it as well which I think he found a bit tricky for some parts, as she was on top form for the half  hour he was in with the repeated questions, but she also kept referring to him as my husband – which he DID enjoy as she was spooning out the compliments about how young and handsome he was haha!!

I have had – as well as being sodding knackered – a few very weepy emotional days. Bawled my eyes out a fair bit… Started crying with frustration for example because I dropped my purse then my stick trying to get cash out, in public with a queue… Because I just couldn’t coordinate my stick, my handbag (which was a cross body shoulder thing!!) AND then get some cash out. Apparently that is all just too much cooperation to expect from my limbs and my brain :/ I need to sort that out, or practice at home haha – the same thing had happened trying to answer my mobile before Christmas and I’d started crying in anger on the pavement. Maybe I blame the bag?! It really is a weird relief knowing that it will have been partially caused by this infection, as although infection = bad, it was also not fun being so wiped out, sore, irritable and weepy and not knowing why!!

I don’t have to start work for a few weeks and will hopefully be allowed to do a phased return anyway, but am slightly concerned about when I will be allowed out of here, how many drugs, whether I have a deranged liver that will explode… So many questions!!! If I feel utterly naff still as well it will at least make it easier to have a proper think about care assessment and PIP forms and all that jazz. I am so on the fence about PIP – on a bad day I would defo qualify, but like most people I know with a disability I spend my entire life compensating, being in denial and hiding it as much as possible!  The stress from the application process and almost inevitable tribunal process (NO ONE seems to get it first time around!) is likely to make the whole thing completely counterproductive :/ Hell I am stressed even thinking about it, I can literally feel my blood pressure rising haha 😀 I had a few moopy nights anyway before realising I was infected up to the eyeballs again, just feeling a lot more disabled than normal, in the sense that I can’t drive at the moment, can’t walk very far, am in pain whether or not I use the stick but can’t manage without the stick as I feel so off-balance in case I put my foot down wrong or knock it, am so so unrelentingly tired, can’t handle lots of people and stuff, can’t deal with a job list because maybe half of one thing will be done in the whole day… Its making me sad as well realising how long this has been going on now. Christmas 2014 I already had my first infected toe, was knackered and sore and stiff all over (penis joke! Filth) and had no idea why at that point. By June 2015 I had had a few infected digital ulcers, got referred to rheumatology and started hydroxychloroquine after a few months of investigations. Christmas 2015 – guess what! Infected ulcer – in Fester! The same damned toe that has exploded this time! June 2016 – Meth and steroids! October 2016 – hospital for eight wonderful fun weeks! Christmas 2016 – The Era of Death Toe and by then it’d been about six months since I could comfortably drive longer than ten minutes or walk further than the end of the street. It has now been about a year and half since I started using a stick on a regular basis and about a year since it became my norm, even when going out on a night out. I’m absolutely shitting fed up of this shit. I’m lucky I have bloody wonderful friends or I would have been so  disgustingly depressed and isolated. Its bad enough as it is, especially the isolation side of things!! – but I have at least managed to pretend to have a social life, even though I am now essentially pretty much housebound. Once the rituximab works (trying so damned hard to think of it as ‘once’ and ‘when’ and not ‘if’!!) I am going to frolick bloody hard and make a socialising nest in the park and I will love being around crowds again and multi-tasking again and it won’t knacker me out. I will also ban infections. I will further ban Donald Trump for he is an absolute twat and although I want to find him funny, it really really isn’t funny.

On a productive note, I have taken the first steps to changing my ‘local’ consultant – from one at a nearby town about 15 mins away to one about an hour and half away. The thought being that if I have any kind of incident, I can get seen at A&E locally still and this will hopefully not be a repeated situation for the whole of 2017! It has been run past my GP on the phone (appointment was today and I am incarcerated attached to an infected digit once again woo!) and she is happy enough as long as she has the support of new doc when blood tests go funny etc. as she was very quick to admit she knows very little about my condition and didn’t want me to be relying on her (paraphrasing!). We discussed also the sense in me having an ’emergency’ A&E pack, with this admission having been the perfect example/test scenario. Me crying and the A&E Dr asking for a second opinion/someone being available to provide that, was in a sense lucky, as not every Dr knows anything about vasculitis or is willing to take what a patient is saying seriously when there is no presentation of sepsis in the initial blood tests or main symptoms… E.g. I was not confused or slurring.  felt queasy but wasn’t vomiting. If I was ‘normal’ I would have sent me home with antibiotics!!! But, that is kind of why I am losing a toe now, because my symptoms were not seen for what they were until it was too late. I would hazard a guess that it is fair to say A&E don’t actually give a crap who my Dr is if its the middle of the night at a weekend – the fact that my consultant happens to be based at this hospital is also irrelevant when she works at several different clinics during the week, a fact which was driven sharply home during my last admission and again today. So a folder confirming the main details, who to contact, the fact I don’t show a temp, the fact pred does absolutely sod all, will basically cover enough to be admitted and get cracking on with treatment wherever I am.  Its been quite a long faffy decision for me, but now that I have had a phone chat with my GP about it, I feel a lot better and just need to get it sorted out with my consultant now if I see her tomorrow. I want to discuss it in person as I think NOT doing so will just make me feel like a coward afterwards and I don’t want any bad feelings or offence taken :/

Happier times… I have still been able to talk to my friends online, even though I am incarcerated! On my friend’s nudging (following her taking advice from a David Wolfe page that thoroughly confused us Ridiculous David Wolfe page – ‘mammals don’t get arthritis!’) I have tried standing upside down naked and rubbing a yorkie chocolate bar into my ears and can confirm that this does not cure vasculitis or associated arthritis type pain. In case you were wondering. Might be because I got confused and ate the yorkie. See Exposing Nutritional Quackery – facebook for more fun 😀

To reintroduce a snippet of everyone’s fave feature from my last lengthy hospitalisation, lets have a dose of Ward Life!

First, it is with an incredibly heavy heart that I have to report that J from previous posts, best ‘waving across the ward bay’ friend of my great great Auntie, owner of the imaginary fish stall, the lady continually wanting to break out of jail and involving me in all her break-out schemes, has sadly died 😦 She made my stay in hospital much more cheerful and we had several very lovely – if very strange – chats together.

I am now back in a bay with three other ladies – very spacious and calm down here compared to upstairs! – and of these three, only one is proving to be testing or ‘interesting’. The other two are chattery and although unwell and in one instance, in a lot of pain, not too miserable or grumpy. The other lady… Oh my 😀 She has quite some self-importance about her as well as a distinc lack of knowledge about reality – and really really likes telling us all off!! Including the nurses 😀 I dropped my stick last night and by then was so scared of her I froze, like someone in the presence of a hungry T-Rex, only to hear her saying quite angrily “People frittering about at all hours, well I hope they all die” – WHAAAAAT??? She talks in her sleep as well and some of what she comes out with is very dark and sinister. She doesn’t like the lights being turned off, goes ballistic if anyone else gets a cup of tea or food before her and before she asked me to help her sit up so she could go to the toilet – which I am not supposed to do, being a patient AND would find difficult to do as I can barely sit up myself! – and I was so scared that she would start yelling at me hehe – I was sweet-talking her for the few mins it took for someone answer my buzzer and thankfully I managed to get away with my incompetence. Discussing food helped I believe, I panicked, it was likely all food related conversation 😀 Once again though, like the lady upstairs I was next to, she doesn’t seem to acknowledge the existence of her buzzer! It is all very well them having one, but if they don’t want to use it or don’t remember they have it or what it is for… Then yep. Trying to stand up themselves or just literally yelling at everyone in earshot until their goal is accomplished seems to work! I saw another fall though yesterday 😦 Which was a good reminder for me not to get complacent and assume that someone who is trying to do something, SHOULD be doing something!

Right. Blogging over with for now. Taken ages again to type up what I wanted. It is bloody hard when you keep falling asleep at weird hours or have parents to talk to! 😀

Tomorrow if I am still in hospital, time for a film maybe. Eyes clearly allergic to the hospital as eyesight has gone naff again. Or its the…. Erm… No, none of my drugs have changed!!! Could be generally how I react to being ill?? Stupid drugs. I think my new game for 2017 is ‘drugs or disease?’ – all the cool kids are playing it!

***OK – I HONESTLY SHIT YOU NOT, SCARY LADY JUST MUMBLED AND THEN VERY VERY CLEARLY SAID “KILL KATH” IN HER SLEEP!!! AND THEN MADE A NOISE THAT WAS MAYBE EITHER A FART OR A BURP BUT SOUNDED LIKE THE ROAR OF A POSSESSED DEMON… I REALLY REALLY MAY BE DEAD BY THE TIME YOU ALL WAKE UP… I LOVE SOME OF YOU LOTS, SOME OF YOU A BIT AND A FEW OF YOU I WANT TO PUNCH FACIALLY. HAH YOU ALL THOUGHT I WAS NICE! OH AND I STILL WANT TURNING INTO A GLITTERY GLITTER BALL BOMB***

In which Mog eats too much cheesecake, Death Toe has a dunking and Kath and Supermum FINALLY finish their HP marathon!

Got up early Monday for the first time in a few days – Little Broo was setting off ‘early’ – we had said our goodbyes before bed, on the assumption I would be missing, presumed asleep… But the little treasure (Mummy’s precious angel…) made plenty of noise loading the car etc., so I got downstairs in time to say toodles again 😀 I did think this was good as pred early and therefore some chance of the insomnia not being a douchebag, buuuuut I seem to remain incapable of falling asleep at a normal time. I’ve now kind of given up to be honest. I very suddenly crash out when life gets too much and the same happens at night – I go from typing away merrily and then am unconscious within moments without much warning – and if I get sleepy during the day, am not too proud to nap… Oh my I am very super excessively mottled in the hand region tonight :O Checkit! Really doesn’t do the colours justice, but I am some awesome shades of blue and purple 😀

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Anyway, once Mummy’s pride and joy had buggered off on his epic road trip back down south, I had some more of my bestest school buddies come visit. So I thought I would honour them with the treat of me showering before hand… and then it alllll went to shit 😦 I was reckless enough to shave my legs for the first time in about seven years (ish) and managed to get too much moisturiser on my leg for the plastic shower sock thing to handle. So the stupid thing let water in and Death Toe got a sodding slosh around in the bottom of the sock and the dressing was sodden 😦 I had to redress the little stinker, two days before I had intended too and this, compounded by the soaking, made it sodding painful for the rest of the day.

The wonderful news for everyone else was that I had a fairly hefty dose of morphine to deal with it – Bear and Hugs (my school friends! I have called them such since – well in Bear’s case, since we were about 12 haha) – got the full special ‘Kath on drugs’ experience 😀 I made them do some jigsaw… We had many cups of tea… All in all, a pretty swish catch up, but Hugs is not a fan of jigsaws. I believe the only reason he didn’t flip the table up to be because it was too heavy and he just wasn’t strong enough. After they had left, I continued being careful, what with the morphine and toe pain and made a slow start on a new knitting project.  Technically it is calling itself a horse, but lets be honest, we all know its going to end up being a unicorn… The pattern combines two new things for me; using stitch markers AND increasing by knitting into the front and back of a stitch. *nerdy knitting shiver* So far, two rows in, I have survived, but very much decided to quit whilst I was ahead and set it aside before I made a complete fiasco of my unicorn! Still not sure I am doing it right 😀

Mom and I got another crack at Deathly Hallows as well with fewer men in the house – we still had to split the two films into a few bits due to a few teensy weenys interruptions… But we FINALLY finished part two last night 😀 Now remains for me to watch the new Fantastic Beasts film… It came out whilst I was incarcerated in hospital and the whole world kept telling me how awesome it was and how much I would love it when I got out… MONTHS LATER I still haven’t seen the damned thing, although this has now meant I managed to watch all the HP films again before – very necessary given how many basic and crucial things I had forgotten!  I got all excitable watching the trailer again just now 😀 Fantastic Beasts!!!!

We got a good chat to my other little brother (lets call him Very Tall Broo) on messenger as the other day! He is still travelling in South America – Little Broo came back and left him out there after three months. Very Tall Broo still has all his toes attached (sadly just like  his older sister), has a good chunk of folk he is travelling with and he seems to be absolutely loving it! He sent me a pic of him and his mates playing football with a whole load of kids (Columbian kiddies I think?) aged about eight and they all have super big grins on their faces and thumbs up all round 😛 He had a good meow over msngr with Mog as well. They adore each other and I am quite sure the separation is hurting them both. She is certainly wasting away. A shadow of her former self. I had to give her a bloody good lick round the last bit of cheesecake the other day! She is always absolutely starving – no one feeds her enough in this household!! Mum reckons she shouldn’t be allowed cheesecake. Suggested she is getting a little chunky… I reckon Mum should stop making cheesecake full stop! It isn’t FAIR – she doesn’t eat any herself – it is like some irresistible form of sabotage – AND SHE ATE MOST OF MY CUPCAKE THE OTHER DAY! Look how much we have bonded now though – right in time for me going back down south soon  😦

 

Ooo on the bit of the audiobook of HP & the Prisoner of Azkaban when he gets into Honeydukes and it is amazing!!! Loving these audiobooks!

Grandpa went home yesterday after a good few days with us – I am hopefully going to manage to see him again when I go down for the next appointment at Addenbrookes, but it has been pretty awesome getting to see him over the holidays.  What with all the excitement of people leaving, other than watching HP DH Pt 2 I did very little yesterday as I was utterly destroyed… It kept on today, I had set an alarm to wake and do a stretch, managed to somehow end up back in bed and overslept wildly :/ It never helps; I am best on about six hours at a stretch, otherwise I am way way too stiff when I do start moving. Once mobilised though, went with Mum on a wee mission out and met one of the women behind the Vasculitis UK charity//online support group 🙂 Vasculitis UK website The facebook group has helped me a HUGE amount – not just in terms of staying sane in hospital!! – but also practically, with advice and support to get myself down to Addenbrookes. This particular lady is someone who was always up for a msg chat or a phone call when I needed it and it was very lovely meeting her today  😀

Off back down tomorrow wooo! Missed my friends – will be amazing to see this beaut as well, although she is now about 10 times the size  😀

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We do need to sort out some business first though… My parents have some nanoblock building to do! They haven’t touched Kevin or Dave the minions yet…

#Iamstartingtowonderiftheyevenlovemeiftheycan’tbebotheredwiththepresentsIgotthem

#notsosureIamverygoodathashtags

Oh also – found some epic pictures of Baby Kath I haven’t seen for a while. I was pretty flippin cute obviously and the one with the spoon cracks me up, what with spoons being an autoimmune thing n all 😀

Cranky Kath and The Stupid Mitten aaaaaand other stuff. Last few days of a very weird year… and a very different kind of NYE!

I have literally only just realised that the kitchen stools I have been uncomfortably wriggling on for days whenever I was in the kitchen have a rather comfy back support on them 😀 It would be funnier still, if I hadn’t already got a bit of a sore back from literally just the last half hour!! In the kitchen hiding whilst everyone watches something noisy and action packed on tv… I went to watch Rogue One the other day on the big screen – 3D no less! – and whilst it was good and I got all super nerdtastic about it, (especially the Admiral!!!) I quite definitely haven’t got my new quota through yet for tv noise for this new year! Really not convinced about 3D either. Have been saying it for years… Nahhhhhh. Ahh the boys tell me it is a Mission Impossible film – I will stay where I am, with my cup of tea and my lack of conflicting loud noises and people (other than me, I allow myself to do it) talking over the film…

So shopping mission was Wednesday… Thursday a lass I have known since I was about 5, when we very very first moved to Scotland, came to visit me! We used to live two doors away from each other until I was about 11 and have been in touch a bit more recently, with her having been reading The Adventures of Death Toe when she is awake with her gorgeous little boys! She brought the smallest one for me to squish and I was honoured not only with a very sweet tempered little boy for a few hours – complete with gummy grins and a decent snuggle, but a proper hefty load of milky puke, which as we all know is how babies express their approval haha 😀 Also got the below as a pressie – thanks Kat haha – I am seriously sensing a theme lately with everyone’s presents and cards 😛 Have had to pause in construction, as I was clearly a bit over zealous with the stuffing and ran out before finishing his legs, let alone his head… I have epic amounts back down South though, so he will be finished!! It has been nice though recently being back in touch with a few people I haven’t seen or spoken to for a while 🙂 One of the more unexpected and loveliest things that has come out of keeping this blog and being in hospital!

Life thoroughly caught up with me by Friday. Not sure if it was sitting in the kitchen too long on Thursday and not leaning back on the seat – a childhood of parents telling me not to slouch has clearly had SOME impact haha – yes yes, I shall blame the parents 😛 But yep. Friday was probably the most sore my joints have been in a long time 😦 Didn’t do an awful lot apart from try on bras… and watch Harry Potter 😉

The epic mountain of bras that we cleared out of M&S in an armful, in a bid to minimise shopping time and energy the other day… I managed to whittle the pile of about 13 down to five! Apart from that, Dad and Little Broo went out somewhere and Mum and I had a truly delightful few hours watching more Harry Potter and eating turkey and chips. Or turkey salad… Can’t remember any longer, just know it will have involved turkey >.< I was in a pretty vile mood most of the day on Friday. Not AS bad yesterday. Vile again today (Sunday). I have been finding more and more that I have much lower tolerance for noise of pretty much any kind :/ I was noticing it a lot in the hospital but had kind of assumed that was because of the weird and new kind of stress of being in a fishtank for eight weeks, with nosy irritating old ladies and zero personal space or privacy… It does definitely correspond with the particularly sore days – I basically get a bit flinchy if more than one person is talking at once, or there are too many people in the room… Or cutlery is making clattery noises… Or the tv is on and people are talking etc. etc. 😦 I have become a liability!!! A really cranky, horrible, grouchy version of Kath. I keep feeling bad and wanting to apologise and then someone irritates me again :/ I should probably just stay away from humans.

Harry Potter audiobook on to try and calm my brain down – on The Chamber of Secrets at the moment and just realised quite how awful the voice Stephen Fry has for Hermione is :/ Can’t do anything about it. What a pickle. I’ve got the Deathly Hallows parts one and two to go now in my marathon with Mum – had to abandon it today as boys kept coming in and TALKING DURING THE FILM…

The definite low point of Friday (aside from not being able to move very well and moving like I was made of what I was later describing to myself very carefully (morphine…) as concrete museli…?????) was The Mitten Incident. I had cracked on a few days ago and was finishing it off during yet more Harry Potter (film five I believe). First, I had cast off and was stitching up and realised I hadn’t left a thumbhole… Undid all the stitches, factored in a thumbhole, started stitching further down the side… and then realised that I had got a bit too premature in my panic and had put it at the wrong end; that being determined by the different edging I had cleverly assigned to the top and bottom. SO, the newly created gap was stitched shut and a new one created further down the edge. By this point, Mum was already smirking at me and I was growling. Then… I finished the mitten. I squeaked with glee and pulled both of them on… and realised that one arm was significantly colder than the other. I don’t know how the hell I managed it, but I have successfully made the new mitten six rows exactly longer than the first mitten. Given that this is now two perfectly finished and otherwise identical mittens, I am not mentally or physically capable of unravelling it to remedy the problem. So next time I order more yarn from the horribly expensive awesome yarn shop, I will get more and make a second longer mitten. The shorter one can become some kind of overly fancy phone sock…  For which I will need to sew up the thumbhole!!! Mum thought this was all very amusing. I thought it was a very sad and painful ending to what had been a rather epic journey with the mittens, having started the first one in hospital and having been ever so proud of it. Pride comes before an unfortunate miscalculation!!!

I was also really not so great yesterday (Saturday), both joints AND Death Toe being a complete git. I had to do a dressing change, as I had put it off Friday due to being sore and wound up.  For the sake of finding a good point in this, it did mean I could save it for Grandpa’s arrival, so he got to see the whole process, which he displayed an appropriate level of morbid curiosity for… He offered to help, but frankly help is a bit useless as it is quite definitely a one person job and I barely let the trained doctors and nurses touch it, let alone anyone else!! But aye. The inadine (brand name! – basically iodine on a gauze) dressing that gets wrapped around the join and most of the dead bit, keeps Death Toe dry and from becoming infected – or I imagine rotting or mouldy!!! For the dressing changes, less is definitely more and I basically just have to very gently wipe away any excess inadine, put a new bit around the join especially and then magically convince a new bit of foamy dressing pad to stay put whilst I then hypafix it in place. Once that bit is done I can take the gloves off and it gets a bit less fiddly, but trying to get the gauze to stay put under the foamy bit on Saturday was very challenging!! The live bits of toe at the boundary are also not enjoying the inadine and were all crusty and it is making a very odd edge where the dead part is pulling in and away from the live bit as it shrivels. Very slowly, but we do definitely have shrivelling!

Death Toe foot at the LAST dressing change was noticeably more swollen than the other – and I had also suspected it was for a while. It looked like it still had the same water retention problem going on and I did a test the last two days and didn’t use the Nitro-Dur patches (increases circulation locally) and it has worked instantly – swelling in the foot way way down and less painful in the rest of the foot. I have also found the same thing happened as occurred a week or so after the methylpred, when the original wack of water retention started to go down and got some AWESOME snake toe business 😀 Just the actual alive foot shrinking back down to normal I guess, but the top layer of skin on a few of my toes peeled off in the most amazingly satisfying sheets yesterday – yes that is unbelievably gross, but for all of you covert scab pickers out there, imagine the best scab ever!! Am listening to The Chamber of Secrets audiobook, got to the bit where they go into the chamber and the giant snake skin and it just reminded me 😀

It was New Years Eve yesterday anyway – started off the day with parents and Little Bro sorting out who was coming round for food and drinks… Laz (old school friend) said she could come over as well to drink tea with me 😀 Dad managed to get himself in super big trouble very early on in the day, for not recycling the food waste (I may have not helped matters at that point with a few snitches hehe) – he got a pre-party, mid-food prep glass of a nice whisky down him and got verrrrrry brave… He was also already in trouble for organising a very typically Scottish NYE house party and then making MORE SOUP rather than… Oh say… Any other job. This enraged Mum. I can fully understand why!!! We already have many many many loads of fresh soup from the past few days. So many more jobs needed to be done. Dad making more soup? Not so helpful Dad!

[Harry is SO SLOW at realising Tom Riddle is not his friend in the chamber… Bloody hell Harry, catch on!!!]

Anyway, yesterday eve was amusing. We had a houseful – all carefully vetted for illness beforehand!!  Little Broo had a whole load of his school mates over, most of whom I have known for many years and watched grow from lovely little boys to hideously tall beer drinking giants, who think they are super witty.  The food was ace – venison casserole! The ‘adults’ stayed in the other room out of the way and myself and Laz spent the majority of the evening drinking earl grey and ribena and supervising… Watching… :/ Several rounds of increasingly weird games of circle of death and yeh… It started off weird before they even drank anything 😀 There was some fun whistling singing thing using cracker whistles as well. I completely by accident timed the drugs perfectly; realised at 8pm that that meant the next painkillers were gonna be midnight – childish maybe and obviously blah blah drugs are serious and should not be taken lightly blah blah… but my midnight toast for the New Year was 5ml of liquid morphine 😀 It gave everyone a bloody good chuckle and kept me on an even keel pain-wise 😉

Bit sad that my first non-drinking NYE in… ten years!! – happens to be the one that the parents produced the biggest bottle of gin I have ever seen 😦

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One of the wonderful young gentlemen did a pretty piss poor effort at making a list of toe jokes… Essentially turned out to be words that can involve TOE in some capacity 😀 I promised to relate them and give him credit anyway, so here goes! Thanks Tom 😉 Never heard any of these before to be fair, so points for originality!!

TOEblerone… TOEfu… Whats the story in TOEbermory?… Sticky TOEfee pudding [we had some, it was awesome]… Whats your fave song from Annie? TOEmorrow… TOEmorrow… [full song ensued]…

Oh and not toe related, but a rather strange ‘which would you rather…’ game, that had what was possibly the BEST options ever 😀 ] “Which would you pick? For every baby you see to appear to you as a muffin? Or every time you sneeze you swap gender?” I was laughing so hard by this point I was leaning over the table for further support, as the fact I was sat down wasn’t sufficient.

I managed quite a late night anyway and had a lovely one, but a bloody weird one! Didn’t get moopy either; most of my bestest buddies were having a pretty insane party back down South – the pictures today have been very amusing 😀 – and I had wondered if I would miss it all a lot and get sad, but I survived 😉

[Bloody hell he still hasn’t figured out who Tom Riddle is!!!!]

I spent the last two New Year Eves with friends – at a farmhouse party which was AWESOME (I still remember the venison stew and dumplings!), back when I was first getting to know a lot of my current buddies – and then last year at a party in some woods in the middle of nowhere – by then I was already very much not a very well Kath and was sore as hell – I spent last 1st January absolutely crippled on the floor of a yurt, having got way too cold overnight and done way too much :/ At least this year I have learned my limits a little better – although only relatively recently since hospital! Glad I didn’t get moopy anyway. That is a bit pointless and not a good way to begin a year 😉

I shall give the final word of 2016 (ish – of NYE-night at least) to Little Broo, addressing one of his oldest friends. Friend has known my Mum for a super long time. A few hours after midnight, when Mum was dispersing and saying her goodnights, he came out with the following:”Julie. You’re looking really trim right now. Its taken the alcohol to get it out of me……….”

Little Broo: “BE VERY VERY CAREFUL RIGHT NOW!”

He isn’t getting the overall final word though. I want that! I learned last night that sadly music is going to need to be avoided for quite a long time… I was sitting in the kitchen and some rather awful cd of ‘Boobs’ (Bublé) and Sinatra etc. was on and I started doing a sub-conscious toe wiggle… NOTE TO SELF: DO NOT TRY TO TOE WIGGLE TOES THAT ARE PARTIALLY DETACHED/DETACHING. I didn’t learn immediately either, I did it several times 😦 Funnily enough, although I am much much less sore today – joints as well as Death Toe- he is doing the odd very sudden sharp twinge, quite outside of his normal repertoire! I reckon he is having his revenge against being wiggled!! 😀 Little shit 😉

It was utterly delightful waking up without a hangover… I will say that for staying sober!! Had a little faff around with some new yarn… Not sure what to do with it yet, but it is called cupcake and it is beautiful!

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Finished two new nanoblock models by the way (for all those I managed to get addicted 😀 ) – these two were very easy compared to Keith the Unicorn 😉 – meet Cyril and Francis respectively. Next up is a much larger model – some kind of fancy castle business!! Ahhh Harry Potter audiobook once again working to calm my brain down a bit out of grouch mode 😀 Reckon I can go brave human beings again for a few mins and say bye to Little Broo before he goes back down South… 😦

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Death Toe made me do it – sales shopping! :D Having fun whilst chronically ill…

As planned, I was up nice and early this morning and went on a jaunt with Mum after a fairly lazy morning of drugs, food and one and a half cups of tea… Particular missions included some new bras, tackled by doing a broad sweep of pretty much every single one in my size that is halfway pretty, to take home and try on at home/be returned if required. The pile is stupendous 😀 Got some skirty/dressy tings as well! I had a lovely day – a bit of a rarity getting near actual shops!  – and then compounded the damage by completing every bit of online sale shopping I had been half planning over the last few weeks… Oops… Death Toe made me do it, honest!!!

Featured image is by someone who was a school bus mate of mine growing up – lived very close by; he is back home for Christmas by the looks of his posts!! – taken in the Ochils – the range of hills spreading behind my folks’s house. The below was taken at Loch Leven – again pretty bloody close to their house 😀

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So pretty!! He consistently takes amazing pictures, puts them together into calendars sometimes and so many of them are from places in Scotland I am familiar with; it makes me very happy following the page and seeing his posts 🙂  Sunrise Scotland – beautiful pics!

Back to the shopping expedition today… A few of us were sharing this round the other week and I saved the link and kept going back for a re-read: “I won’t apologise for having fun…” Several posts that were made today in the Vasculitis UK support group have started up similar conversations, along the lines of people having – and voicing – opinions on ‘how well’ you are, or whether or not ‘you should be working/or not’ or making judgements based on snapshots they see of you on ‘good days’…

It was making me think that anyone seeing me today would have struggled to tell how much pain I was in at some points or how tired I was getting. I had a spontaneous nap in the car on both the way there and back… I was sore as hell trying things on – with a LOT of assistance from Mum being my general discards and hanger servant 😛  – but I was absolutely sodding determined to go that final floor in Debenhams just in case they had something exciting as it is INCREDIBLY unusual now for me to get anywhere near an actual shop, where I can try things on. As many of my friends commented when I was out of hospital, I am a silly stubborn bastard when it comes to pacing myself and asking someone else to help me. A huge amount of it is having lived by myself for two years and having no choice. Another huge part is that you get used to a certain level of background pain being there all of the time.  I am not suggesting for second it can be ignored all of the time, but I’ve found particularly if I have a specific mission or I started off not too tired, or am not having a ‘bad day’ sometimes I can push on for further than other days and hide it to a much greater extent.

Choosing to walk around that last floor – once I had already decided I was sore, was used almost more as a chance to stretch out, as I had started to stiffen up and I was trying to delay it until I was on the sofa at home :/ Sometimes – for me anyway – if I am already sore and aching in my joints, it is actually less punishing to keep moving around a little bit rather than stop, at least until I am somewhere warm and comfy. Cold particularly is an absolute git once I am sore. I can walk differently and calculate how I am compensating on the stick and balance how much I am favouring Death Toe compared to my joints. Yes, I overdid it today and my back and shoulders hurt from trying on a few dresses and my knees are NOT happy with me – and once again the fact I can feel all of this on the painkillers I am on is a little bit alarming!! But it was a calculated and knowing overdoing; we had the tasks broken into chunks and I had quite a few stages I could have stopped at if I had needed to. I had FUN, I did something I very rarely do now and I would have been mopey as hell if I had stayed at home!

I brought it up with Mum at one point, the fact that I get asked A LOT “what have I been doing to [myself]?!” when people see me with a stick/fluffy sock and sandal. Sometimes I can deal with it, other times it really irks me – it has so far always been well intentioned – e.g. the Tesco delivery man was horrified when I explained that the reason I was sitting on the bottom step leaning on the wall whilst Inside Friend came and let him in, was NOT a hangover!!  I then felt bad for making him feel bad by not letting his assumption stand… But curious questions at that point are welcomed by me and I would imagine by most in my situation. Sometime sadly people respond with judgement or ill-informed opinions or just plain ignorance, hurtful assumptions and comments. I had one amusing moment today where a woman in a lift asked something along the lines of “what have you done to yourself?” and I replied with the standard “its actually a long term chronic problem…” and because I was feeling a little bit reckless, I threw in a “my toe is actually falling off, it is a really really dead toe! [or similar…]” I am not normally AS blunt, but I guess knowing I will never see her again and that I am quite far away from my normal stomping ground made me use it as a test situation.  Genuinely not the drugs – I was about due some more at that point and feeling every minute of it!! 😀 But yep. She responded wonderfully 😀 Something along the lines of “o you poor thing! – you remind me of my granddaughter, she is a top model!” – I can’t remember the exact phrasing, but it had me in absolute fits, particularly as a) I do not normally fall into the category of ladies who receive that type of compliment, b) I was knackered, sweaty and disgusting from trying clothes on and overdoing it by that point and c) Mum came out with an absolute belter once we were out of earshot – worthy of HER MOTHER – yes Mum, I said it! – and said “She looked like she was high on something” – THANKS MUM!!! I get likened to a top model and the person looks like they are high 😀

Once at home I have had the rest of the night on a proper Harry Potter marathon! Watching the films on the magic recording box, as they are all being shown on tv at the moment – it has been so many years since I saw them and certainly the last few, I will definitely only have seen once, in the cinema, at the point of release. The Prisoner of Azkaban had a lot of peril and tense atmospheric music and I wasn’t dealing with it very well 😀 I am an absolute jessie!! Used the knitting as a distraction – Mitten Two is about half done now and I am flying through it compared to the pace I was achieving in hospital!

Having the pred so many hours earlier was supposed to make me sleepier earlier 😀 FAIL!

Anyway one of the things I very cleverly bought today was some yarn off the ‘loveknitting’ site as they were practically giving it away :O Would have been rude not to. Bought some super chunky multicoloured yarn with the specific intention of making this: Knitted bag – free pattern ooooo! Will be the first time I will make anything requiring the use of either circular needles OR double pointed needles – let alone both! – but I am aiming to make it slightly easier/more forgiving by just using the one colour, as the wool has enough change through it to compensate… I hope!

Dang it – not sleepy 😦 Might have to listen to HP audiobook and try and get ahead of the films… Not sure that is possible more, lot of words in those books! My nose is sodding cold!!! Has anyone ever had their nose go ischaemic and ulcer/get frostbitten purely from shitty circulation/vasculitis??? Toe falling off spontaneously is one thing… What if my nose does it?????

Death Toe ALSO finds Tom Hanks films scary. JUST SAYING.

The day started off beautifully in the afternoon: came down and ate some leftover pigs in blankets… Had some drugs… Did quality bonding time with little broo… He went away to play poker… Saw one of my oldest and dearest friends and did some jigsaw and had a bloody good natter and several cups of tea with her (happy times!!!)… Dinner was a lovely leftover salady thing… Then it all got ruined!!! I just had a very traumatic evening watching some horrible Tom Hanks film about pirates and hostage situations and from the very first minute my blood pressure was up, my other toes and fingers were dying and my liver was getting increasingly deranged!! DERANGED! I really don’t deal with tv and dramatic situations very well 😦 O and little broo reckoned earlier that it wasn’t so much that hospital had made me more unhinged, but rather that I wasn’t very well hinged in the first place :/ Not sure how I feel about that!!!

Dad said no to changing the channel and went on a lot about how it was a true story… It was HORRIFIC!! Very horrific. I got the last ten mins at the end of Love Actually to soothe my innards – LOVE that film – but yep, that is why I don’t watch tv or films!!!

Finally picked up the knitting again to start Mitten Two – mitten one as featured being of hospital fame…

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Urgh look how ill and hospitally I look 😀 My eye bags are definitely less cavernous… Death Toe is MUCH less painful now; the nerves have definitely ceased trying to live and communicate between me and he… But I reckon joint pain and stiffness are worse :/ Swings and roundabouts!

But aye. So I picked it up, did a row, freaked out because I had forgotten how to knit basic rib (its been a while, ok?!) and made the mistake of asking Mum… Its like watching someone else change the nappy on your newborn child; she was making statements like “oo I haven’t done this in a while!” and “oops I just lost a stitch…” and frankly it was almost as nerve wracking as whatever that horrible film was.

I let her knit the three rows I needed and made her put it down and walk away… Dad in the meantime is chipping in with “I used to knit…” – horrible visions now of coming down and they are both messing around in my stash… *shudder*

Had a few late nights… Did some exceptional purchasing of nanoblock kits (restrained myself quite admirably, left most of them in the wishlist!!) and some very much required stationary (can never have too much stationary) and tomorrow is potentially a sniff at an actual shop, in actual fresh air, with actual human beings :O It has been a long time! I need to sort my body clock out now as the pred has to start happening a LOT earlier to try and reset the insomnia at least by a few hours! So agreed to an excursion with Mum tomorrow now, which means waking up early, which means going to bed now haha 😀 I have no idea how I am going to handle walking/people/standing blah but quite sure Mum will be on the ball with yelling at me to keep “that toe” away from everything and everyone and worst case, I will just start crying with exhaustion and have a nap in the car 😛 Night y’all!!!

Death Toe’s first AND LAST Christmas!!

I got a little excited last night about Christmas and as a result stayed up till about 3am (as you do).  I am blaming the pred – such a common excuse!!! – but I am also aware that a LOT of people on the support group were awake as well, so yep I think its a valid one 😉 Santa snuck in at about midnight whilst I was peeing and left a stocking on my bed and buggered off to sleep… Or wherever. How would I know. He is Santa… But this meant BECAUSE NO ONE WOKE ME UP, I got up at 1pm… Which meant a breakfast of pork pie slice to take drugs with and then being a weird pathetic kind of sous chef with the rest of the fams yelling at me to get my toe out of the way every time I set foot or feet on the kitchen floor!! I made scones yesterday. I’m not COMPLETELY banned from the kitchen!!

Mum and I have been on the cups of tea all day and the boys (broo and Dad) and Mog (our cat that kinda thinks she is a dog) have been boozing gently allll day.

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We did the usual traditional turkey roast and sort of accidentally factored in the missing brother in terms of volume – last year big broo ate nearly as much as the rest of us put together. Yes, I am prone to exaggeration A LOT, but he honestly ate so much it was scaring me. So this year there is quite a bit of food left and we will be eating turkey/veggies/stuffing sandwiches for a few days 😀 I still reckon if we put it all in a pot and blitzed it with some gravy it would be an amazing soup, but no one seems keen to try it yet.  The best bit of Christmas dinner this year was managing to get away without eating the two sprouts Mum put on my plate hahahaha FOILED YOU MOTHER!!! Also, the toasts we did. Big broo got one, parents did some nice ones about health and happiness etc… I was getting told off as all of mine were slightly more… Negative 😀 They involved a lot of addendums and sub-clauses… Such as “To Death Toe. May he piss off really soon. But not too soon. And not in a painful manner. And not leaving a mess behind him. Preferably not getting infected or damaged any further before he falls off…” Apparently you also aren’t allowed to wish anyone a lingering death so they quit their job :O I had to amend that one several times as well before it was allowed to stand :/ Spoil sports!

After Xmas din dins, we did a concerted effort on the pressies – I got some awesome bits for my house when it one day gets habitable and I can move in – including a rug I have been lusting after for a looooong time 😀 It is so super colourful!! The plan with the house has been from day one to have it very neutrally decorated, so that I can vomit colour and uncoordinated crap alll over it. Plants as well. It is going to be a kind of multi-coloured shiny jungle 😛 Mum shudders every time I expand further on my plans to her 😀

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See also spotty bag and patchworky bag 😀 I did well. I must have been good at some point last year… >.< I also landed myself the below, with the plan I think being that I am supposed to use the empty jar to keep Death Toe in when he finally fecks off my foot 😀 Nice….

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The vast vast majority of the day has been spent in nanoblock heaven – I got one for myself, one for little broo and one each for Mum and Dad – matching minions, Kevin and Dave for them!

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Little broo got a rather intense pirate ship – it is a difficulty level five and he has been doing it so far for… six and half hours non-stop haha that is amazing 😀 It isn’t finished… I would estimate he is about two thirds done. I lie – he had about a 40 minute break at one stage. We went through for parent bonding and watched the animation of ‘We’re going on a bear hunt’ – one of my Dad’s all time fave books 😉 I struggled from the first minute. A lot of very dangerous business going on in that short film. Babies crawling all over dogs. Parents leaving children unattended for hours. The children buggering off outside in a weird world where the weather changes every five minutes and THE BABY DIDN’T HAVE A HAT ON – a particular bug-bear of mine. And speaking of bears, there was a bloody bear and the film shows the girl giving it a sandwich!!! That is hardly sending a good message to young viewers!! I do not watch tv much and as a few of my friends are aware, when I do, I particularly love arguing with it… This brought out the very worst in me 😀

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I got myself one (partly as I knew little broo would take it very seriously haha) and ooo yeh I found a unicorn 😛 It was awesome – very very very addictive, I have definitely found a new sad git hobby!!! – weather aside: bloody hellfire it is WINDY HERE :O – actually a bit fearful. Yes the house has stood for many centuries in various forms, but what if tonight is the night it flattens me and the cat?? Apparently we have mild snow warnings (unlikely) and JUST into gale force winds outside. Sounds like a flippin hurricane the last few mins!! – so yep. I made the unicorn and it is amazing and I am getting various name suggestions, many of them very rude and I think I am going with Keith 😛

I was surprised at how much fun it was, you don’t really need tweezers but I have shaky fingers and delicate finger ends to contend with so they helped for the small fiddliest bits! The instructions were also manageable – so the unicorn was a level two difficulty hehe and it took me a good wee while, so I reckon little broo will be on his pirate ship for a while!

One of the most awesome things about being back up in Scotland is always seeing Mog. She doesn’t like me anything like as much as she likes my brothers – her fave is bigger broo, but he is away, so she is making do with little broo and snuggled up next to him on the cushion that she is not allowed on – SNITCH WITH PHOTO EVIDENCE!!!! – for many of his nanoblocking hours, just occasionally swiping at him to make sure he remembered she is a cold hard killer… That is how she expresses her love. Also get to use comb-on-a-stick – a long standing member of the family, used out of necessity as she absolutely LOVES getting combed, runs over to you when you tap it on the floor, but then decides every few minutes to go insane and try to eat you mid-combing!

She also flatly refused to have a selfie taken. It was a very painful process involving crawling around on a slate floor, which I shouldn’t really be doing – and the majority of the pictures had me looking like some kind of insane stalker. If either of my brothers had tried this, she would have sat beautifully and done tricks on command. Little shit.

Yes, I am a nut case 😀 Note also the very fluffy new hood. Fave will approve when she sees it 😉 So I think little broo is sodding off tomorrow to go play poker… I am just gonna bimble around trying not to eat too much of Mum’s cheesecake… I am flaring a bit weirdly at the moment and all of my mottling is on fire – I have very cool spiderwebby purple patterns all down my arms, middle of my back… Back of my hands, which always look kinda mottled, but especially so last few days! Been sleeping in mittens etc. and waking up warm, so not too sure why :/ Meh. Liver is deranged so probably just a side effect of that huh! Until they get some kind of epic biopsy to check if it is maybe CPAN, I will just stay at ‘weird undifferentiated small vessel vasculitis with some kind of coagulation problem as well’ forever. Not sure how they are gonna do a biopsy as well with me back on warfarin after Xmas, if they can’t even remove a tunnel line with me anti-coagulated… [oooo gotta go inject myself, thank you brain, good remembering!!] Which reminds me, I got cranberry body shop goodies as well, which I thought was Mum’s idea of a giggle, as I am guessing at the time of purchase I would have not been allowed any cranberry to EAT because of the warfarin, but as it is I currently can (until the 10th!) and I had LOTS with turkey today 😀 I currently smell very good. Just doing a cheeky nanoblock shop… They are so addictive. Don’t start……!!!! Merry Xmas to everyone, hope Santa was good to y’all!

DEATH TOE WILL NEVER HAVE ANOTHER CHRISTMAS MWOHAHAHA!!!