Hand or foot?!! Hee hee hee!! Kath would like to publicly apologise to Mog the cat, Dad has all of the older ladies flirting with him and I don’t have a clue when I am out of here :/

So today was essentially a repeat of yesterday; was woken up for 0bs, breakfast, blood tests, more obs… Didn’t properly wake up at any point and was completely out of it until about midday!  Guessing I needed sleep… Have been feeling a bit better today, excepting for the bloooooooody itching!!

This kicked off before Christmas and has been getting slowly worse and worse and I quite rudely blamed the cat, claimed she had fleas (although no bites and no one else itching haha) and made her suffer the full treatment, which she did NOT enjoy. It blatantly  wasn’t the cat though; hence the new game ‘drugs or disease?’ The Dad dropped in earlier on his way back home and claims she is very indignant and is demanding an apology… So Mog, I am sorry.  Dad also got more compliments showered on him from my newest next door neighbour; along the lines of thinking he was my brother haha! Mum – there are a LOT of ladies eyeing him up. Yes, they may all be old enough to be HIS Mum, but I would take the threat seriously. There was a lot of ‘ooo-ing’ after he left 😀

My newest game from today is ‘hand or foot?’ 😀 See featured pic hehe! I had urgent need of a shower today but have managed to lose my plastic foot sock thingy that keeps Death Toe and dressing dry. Had to keep cannula dry also.

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This is done by just micropore-taping a surgical glove onto my hand, so I figured – a foot is kind of a hand… Sort of… and it bloody worked!!!! I did also wang it in a clinical waste bag and do a half-arsed tape job to keep that on, but they never really stayed watertight in the past. I have revolutionised dressing protection 😀

After a few days of scratting away like someone demented, I have finally had some piriton added to my chart which means I might wake up without having clawed my face to shreds! The plan is ONCE AGAIN to wait for the Dr (hopefully MY Dr) to do rounds tomorrow. There may then be some results back from cultures so depending on what they show, I may be allowed to go home with some appropriate oral antibiotics!

One of The Three Musketeers came for a flying rounds visit today and advised the above and that my inflammatory markers, including CRP are ‘way down’… So not so sure if this relates to pre-Xmas levels or admission levels… Or if I even give a crap! When all the results are stashed on Patient Access I can see them then anyway 😀 Absolutely NOT getting into it now. Would very much like to get out of here asap :/ Birthday stuff for friends this weekend and any further investigations can be done once I have jumped ship!

Scary Lady already making terrifying noise – she just woke up before and laughed her head off for a while, said something indistinguishable and fell asleep again 😀 Right. Film time maybe… Or bed time… Not sure!!!

 

 

 

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!!!

****WARNING – updated Death Toe pics for a festive treat – baby Death Toe also featured :D**** Frequent flyer! Rituximadoodah Day… (featuring GET THIS BLOODY LINE OUT OF ME!!! – also starring Goodbye Hendricks III!) Helloooooo Christmas with the fams! :D

Since last posting, I’ve had a long, long few weeks of repeated GP appointments for Death Toe, going through my drugs several times to make sure I had everything ordered before Christmas holidays (my normal level of brain fog plus drug importance plus Christmas excitement has made this an epic task!!), working out exactly how weak and feeble I am – and going in and out of the hospital FOUR TIMES!!! That is just LUDICROUS!

Initially it was for a rheumy review for bloods as a pre-check for the rituximab, as mentioned last post. This was on Tuesday 13th… and flagged – for the first time ever that I am aware of – slightly dodgy liver bloods. I had raised ALT levels – ‘elevated liver enzymes’. I have a deranged liver 😛 A little confusingly (both initially for myself at the dawn of blood testing and now for anyone I have mentioned it to (“…have to lay off the sauce then won’t you!”)), this doesn’t mean liver function is impaired, it is more a reflection of generally high levels of muscle damage or inflammation.This could tie in I suppose with how much more stiff and sore I have felt lately – pretty much the worst overall in the last 18 months at least, especially when you factor in the difference the morphine must be making! If this IS the case, amusing (to me anyway!) then it has taken TWO YEARS to finally show up – although I gather that this may actually be fairly normal for bloods to take a whole long time to reflect autoimmune diseases properly for some peeps! The other thought is that this is caused by the medications I am on, because of when it started to show coinciding with two changes to my meds… Omeprazole (tummy protectors increased for the bad silent reflux) and the co-trimoxazole I started after dose one of the rituximab, just before I was discharged from hospital.

SO, the co-trimoxazole was stopped asap, with the plan being that if this didn’t work I would stop the omeprazole next. I then went in that Thursday to get dose TWO! This day got dubbed Rituximadoodahhh Day 😀 For this I went into the Oncology Day unit, a really comfy lovely day ward. The staff are ace, the seats are super comfy… They had footrests lying around…  They re-did all my bloods again and worked out my Gamma GT levels are dodgy as well – basically more liver function business. My tunnel line (Hendricks III) got a serious flush and re-dressed – it needed it, as it had only had me paying it any attention in just over two weeks! TOO LONG!! I got my pre-meds through the line then; another (thankfully much smaller) dose of the devil that made my feet go huge last time (methylpred) and some piriton… These are standard protocol and were just to make sure I didn’t have any kind of serious reaction to the ritux. I was sitting for a good wee while waiting to hear if I was going to get the go-ahead for the ritux despite those liver tests (it got run past Addenbrookes just in case) and I was chirping for joy when I got the thumbs up 😀

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I had a proper little stash of goodies in with me for the day – knitting, a book that I still haven’t managed to start – just can’t handle reading still for nearing on three months for some reason :/ Proper cute little new bag for my knitting that one of the lassies got me for me birthday 😀 Finished off my phone cosy that day with some button goodness – chuffed about having mastered moss stitch!!!

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Last time I had the good stuff, I was discharged the next day and was in a head-spin of giddiness and still recovering from the methylpred and plasma exchange as well… This time, I was knackered and sore and stiff – but not really much more so than normal for me right now! It feels very strange to be so delighted about receiving a drug that is basically poisoning me :/ It essentially destroys a good part of my immune system so I can’t attack myself and having now had dose two, it is to be hoped that by…. the end of Feb definitely, I should be feeling significantly better and HOPEFULLY a lot less digital ischaemia going on… That is the new scary thing. When I started going downhill during my time in hospital, the bit that has remained consistently worse aside from joint and muscle pain, is my stupid bloody fingers. Apart from pinkies and thumbs, all of them on both hands are trying to emulate Death Toe and have CRAP circulation. This is meaning not only shitty capillary refill, but the appearance of tiny little ulcers and bits of damage from NOTHING – invisible papercut type damage that you only realise is there when you TOUCH A LEMON 😦 Or even just put your hand under a tap :/

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The above is absolutely standard now on six of my fingers. It is scaring me, as this is basically how all of the previous six or so digital ulcers have started off; with ischaemic areas, slowly forming ulcers that then get infected.

***UPDATED DEATH TOE PIC BELOW – AND A BABY DEATH TOE PIC!***

I found the below the other day, of Death Toe back in August 😦 It actually made me cry, at this point I was still very naively believing that inadine dressings were enough and not realising quite how out of control the underlying disease was getting. Folks – meet baby Death Toe!!! From this, to absolutely destroyed and no going back within the space of less than three months. Playing the blame game is useless but it is very hard not to when I look at this.

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So yep, this is basically all ‘looking good’ – as weird as that is to say something so gross looks good… As long as it isn’t infected at this stage I basically have to just suck it up and be delighted.  The demarcation line is healthy and neat, there is no sign of infection… I have been given very clear instructions on how to look after Death Toe over xmas as well; I have a huge bag of bits out of the dressing cupboard I was so envious of!! Gloves, gauzes… Simplicity is the key at the moment with the dressings, it is literally a case of a very gentle wipe to remove excess inadine and any ooze, fresh strip of inadine round the whole of the dead area to keep it super dry and then some awesome foamy padding stuff to keep it comfy. I registered as a temporary resident today (in Scotland) at the local GP, so that at the slightest sign of any infection (which I would think I am pretty good at spotting by now…) I can go straight in and get the little git checked over. The space on the form for details of recent admissions, conditions and any current medication was only tiny, which I found hilarious and under advisement have emailed them the whole sordid story, so they know what to do with me if I am found in a Scottish ditch!!

Day three of hospital fun times was the removal of my Hickman line, planned for the following Friday (16th) after the ritux – in between I just had days and days of GP visits for toe dressings and picking up prescriptions. Honestly think there was ONE day that I wasn’t doing something medical. So I went in on Friday… and because of having started the warfarin, my INR level was just too high already, only four full days after starting it! I was a bit cheesed that this wasn’t thought about before me going in (£20 quid there and back for a taxi…) and getting blood tests etc., but basically because I was on warfarin AND fragmin injections still – double anti-coagulation! – my blood was too runny for them to want to do any kind of surgery. I spent a big chunk of the day in the hospital with the upshot being I was sent home and had to stop the warfarin and fragmin asap, and had a little dose of vitamin K on the way out to speed up the clotting! Good news is, because I need the initial INR start up appointment again now to restart the warfarin, it’ll be after Christmas now… So I can have cranberry sauce with my turkey YEAHHHHHH!!! To celebrate with me, listen to my FAVE Christmas song 😛

I have been listening to something a little more classy as well over last week 😉 For anyone who is a fan of Neil Gaiman, or the film Stardust – or who likes audiobooks or radio dramatisations at all, the following is so lovely!! I really liked the film for its storyline, but was always put off by Claire Danes (had never forgiven her for being such a wet fish in Baz Lurhmann’s Romeo + Juliet) AND by Charlie Cox’s fringe. This radio version is just pure loveliness 🙂 Stardust – Radio Version – AWESOME

I went back in Monday, after a weekend of lots of leafy green veggies to get my blood all sludged up again and… I absolutely bossed it! Or at least, the surgical team did… I went in disgustingly early so they could do my INR bloods again and get bumped in first on the table if it was within an acceptable range and yes, I was clotting enough. Had a bit of a pickle getting bloods taken again – I have awfully fed-up veins as mentioned before from weeks and weeks of hospital, AND I have a blood vessel condition AND I have thick sludge blood!! A very lovely and well-meaning nurse accidentally made a bit of a mess of a desperate attempt to get blood out of my inside wrist, with a whopper of a bruise that was getting more exciting daily for a while! This isn’t a standard blood draw place obviously, but sometimes after six or so tries both the nurses and I get desperate!!

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One of my friends, the vampires, ended up coming to get some blood out of me – being an expert blood sucker, she nailed it first time, opting for the knuckle – again not standard first pick, but seems to work very well for me, despite awful circulation to my hands – go figure!!

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They did full exciting surgery prep – on a table, in a gown, draped, nurses counting the instruments ten times… There was a MASSIVE light above me and it was like having the sun turned on half a metre from your face 😀 Also reckon it would kill you if it suddenly fell and I may have spent quite a lot of time doing a daydream about that scenario and how they would handle the notes… 😛 The Dr doing the (very minor) op said it looks a lot different to the ones they use, because it was put in at Addenbrookes, but despite some initial grumblings, it came out in under 5 seconds, in what I am referring to as ‘the snip and whip’ in the hope that it catches on 😀 It was kinda neat – I had some local anaesthetic, which nips a little bit when you are injected, but then couldn’t feel anything, except when it was actually coming out, I could feel the weirdest slithering pulling sensation 😀 I had one interesting heart blippy moment but it was after the line came out, where I basically missed a few beats for no real reason. That was very weird, because I was plugged into the monitor and had been subconsciously using the beeping of my heartbeat to keep myself calm… and then it was quiet and I was lying there thinking…. ‘erm…. beep????’ 😀 Anyway, no one was overly worried, so possibly it was just how hard they were pressing on me to stop the bleeding that made my heart grumpy for a few beats! Technical medical reasoning. Oh and – yes, the tip has been sent away to check for infection, they said that is absolutely standard protocol and no one has hunted me down yet to throw antibiotics at me. All in all, it was very interesting see the whole pre-surgery procedure outside of a House episode 😄 They count all the equipment sooo many times!! – and in terms of surgeries you could possibly have done, I reckon it must be the easiest and most straight forward and I sincerely hope I don’t ever have to experience anything to tarnish the treasured experience 😉 So that was bye bye Hickmans line – Hendricks III is no longer sticking out of my chest and I can now wash my own hair again 🙂  🙂

My family came down the very next day – or a chunk – one brother is still swanning round South America, staying in some crazy looking backpacker lodge with a POOL and something like 19 other folk for Christmas Day 😀 He said they are doing a proper Christmas dinner regardless. Very good to see littlest sprog though; it has been many months and he has some good stories from his three months! [Ooo have just moved to the kitchen, woodburner has done a much BETTER job at keeping it warm in here 😀 ] Had a day or two of last min packing and a lot of my lovely wimmins dropped round to say toodles before I headed up northwards 🙂 They are awesome. Got to say bye to massive hairy dog as well. I love her!!

Also got Christmas wrapping finished – above is the glitteriest paper ever, reused after receiving the above BEAUTIFUL watercolour from ma Fave – had commissioned her to do it after seeing a doodle ages ago and I got it for a surprise xmas pressie 😀 It nicely finishes off the series of three I had planned. The wrapping paper should also be framed I reckon 😉

Classic Kath-aside: A moment of appreciation please for ‘Peter and Jane’ on facebook – its a blog style page, a teensy weensy bit rude and provides pretty much continual lols! I only recently discovered this and it’s certainly one of the funnier pages I’ve ever found 😄 Peter & Jane facebook page – much hilarity! Lots of Christmas scenarios I am sure a few of us can relate to, much mention of cheese and wine (at least in recent posts haha!) and the comments are usually on form as well (as per highest rated…)!

Anyhoo. I am home now, back up in the northern stronghold, with Mum, Dad and baby broo – and the CAT!! I had nearly forgotten what a noisy little shit she is 😀 She just meows at you continually, in a very conversational kind of way. She is also amazing at playing football with you and I have given her her present of four jingly bouncy ball type things early, as she basically bats them around the kitchen floor very happily for ages, so long as someone kicks it back EXACTLY to her paws.

The only slightly sad bit about the last few days, has been that I have been a horrible little brat. It isn’t so much me being tired. As anyone on pred or with autoimmune things may well relate to, my tiredness comes very suddenly – ‘the floop’ – and I just crash. Until then though, I have pretty tragic insomnia. Having to suddenly tie in with family routine and plans at my house down south, when everyone is getting things ready for xmas was weird and I didn’t deal with it very well, after having just really got used to having hours and hours to myself again. ONE OF US *cough broo cough* had seriously bad jet-lag and was being all sleepy and non-urgent about life and all of those three were also spending serious hours doing work on my new house for me… So there was quite a bit of guilt at play, as well as knowing I had a lot to do and not a lot of time to do it and worrying about how to make sure they knew how much time and effort it was all going to take/taking – e.g. cleaning the fish tank one eve nearly ended me!! When you look at it in comparison, day-to-day I generally do NOTHING physical to be making me so tired and to be in such a shit mood, UNTIL you count the urgent business of letting the rituximab poison my immune system, as my immune system in turn tries desperately to kill my circulation system!! 😀 It just gets massively depressing being feeble and useless and crap all the time :/

I had a few things to do at the Docs, such as a final liver profile test, for which I got the results back today – a little better, but still not great at all :/ so have to get done again once I go back down. Worrying about this, my fingers, whether or not they would get my injection prescription done in time [they did!] and then if they would have the injections in the pharmacy [they didn’t!]… We went hunting for them in town and NOWHERE had them, so had to get prescription faxed to pharmacy here [Scotland] to be delivered and picked up this morning! [Did NOT miss injecting myself, the bruises were only just going 😦 ] But yep – I was being wheelchaired around town by my Mum and broo, which was fun and I got to see human beings and market shops etc, but it was for some reason stupidly exhausting – to the point where trying to handle getting my phone out of my bag, stay supporting myself on my stick and wanting to keep up with Mum for the final bit back to the house was too much for my body and my brain to handle and I had a grumpy sore cry in the middle of the street!! As Fave pointed out, being in a wheelchair doesn’t save you from the mental tired side of dealing with PEOPLE and STUFF and you also get a LOT colder, which for me is bad bad news, as my circulation is already naff and the cold makes all my joints and muscles much more painful – which I had kind of forgotten would happen in a wheelchair!!  – as well as making my fingers try to die a lot faster!  My nose has also started getting – and staying – very cold – what if my nose goes ischaemic and necrotic and dies? 😦  Stupid nose!!

I quite easily and all too often forget how ill I am. Which sounds weird, but I was actually sitting in hospital quite a lot asking my visitors or the staff to confirm that I was really rather ill 😀 I had spent the past two years – to the month really (it being the third Christmas now with some level of toe death happening according to Facebook flashbacks!) – trying to just crack on with life as much as I could. Needing a stick was a bit of a bummer, but I just adapted how I did the pub and gigs – having naps beforehand, factoring in more time to get there… Then I began working from home and reduced my hours… Started getting food deliveries… It was only this summer I started going downhill pretty fast and even then I was in quite epic denial, until probably about the point my toe exploded with guck a few days after being admitted! A fond memory 😉

So Fave sent me the left as a much required reminder to stop being a twit and remember that I am actually allowed to feel crap with all of the drugs and the hospital and the disease in general 😉 Think I will pass on the spending time outside bit though  – it is disgusting out there!! The cartoon on the right is just lovely 😀

Right. Xmas eve tomorrow! (It is technically already tomorrow, but I am ignoring that fact!) That means American style pancakes, bacon and maple syrup for brunch – a weird tradition we started at a cafe one year, when Dad had emergency present shopping to do on Xmas eve (as Dads all round the country commonly do) – and we all loved it. Mum subsequently nailed down the perfect pancake recipe and we have done it every Xmas eve for the last few years!! Gonna go sleep to make sure I am hungry enough to do it justice 😀

Being home is fab :)

This post has taken a looooooong time to put together – I keep adding little bits and not finishing it and then doing a mega floop and falling asleep very dramatically. I think I underestimated massively how knackered I have been and how much more time you have to do ‘nothing’ (eg. sit and type a blog 😉 ) when you are in hospital!! Being back home has been so utterly fantastic but very tiring and full of so many extra things to do and think about! Even sorting through drugs for the day takes ages and ages – I sorted through the next six days worth last night and it honestly took nearly two hours, I am not even joking!!! I still feel like poo basically – my joints and muscles are about as sore as they have ever been, which I am guessing is a combo of having been sat on a hospital bed for two month and also having not had any immunosuppressant acting since the meth was stopped about… two months ago now. But! I have had the first dose of rituximab and the second dose is being sorted out potentially for the end of this week, so hopefully, one day, Death Toe will have fallen off and healed up and I will no longer be attacking myself all over the place and MAY wake up one day not feeling like someone has been kicking the living crap out of me 😀 THAT is the dream!!! I have asked for a referral for some physio at some stage (thank you brain, just remembered to add it to the ‘follow up with GP list’ 😉 )

The last few days have actually been particularly bad… I woke up Sunday; as an example – and as one does when one is on water tablets, needing a pee incredibly urgently, so there wasn’t a chance to do a gentle warm up stretch to movement. I knew straight away I was going to be very ouchy, so got myself downstairs towards the painkillers quite quickly. Inside Friend has still been staying to Kath-sit me and she helped with some wheetos and a cuppa and then once I had scarfed the painkillers and got myself on the sofa under the Magical Toe Healing Quilt, she went through the drug list with me and got the morning pile done. Saturday I forgot to take pred until about 3pm and I noticed it very very badly – I had the hour of pred clam a lot later and the insomnia thing was also delayed. It was also the second day of reduced pred dose by 2.5mg which may explain a little why I felt so shit the last few days… As although we have decided pred doesn’t do much to fix things, it physically must be doing SOMETHING to me! Anyway.  Death Toe was being an utter nob Sunday as well as bad joint/muscle soreness. I changed the dressing on Saturday for the second time (woop!) and the actual dressing changing doesn’t really hurt as much now (compared to when it was infected and the nerve pain was the major issue… Although I forget a lot that I am on a LOT of painkillers including morphine, so actually it probably does hurt and I just can’t feel it too much!!!). The real pain usually kicks in about half an hour later, where I have carefully cleaned all the sticky gunk from the crack that has formed all the way around the demarcating bit between me and Death Toe and the fresh inadine then soaks in. So that is the kind of pain I had all of Saturday evening and Sunday, and it is a very ‘salt in wound’ kind of pain. I don’t know what happened in my sleep Saturday night, but presumably I was rubbing it on the bed in my sleep as it was much more sore than normal and more in a ‘been knocked around’ way than normal 😦 Stupid toe. So back to the story! Sunday morning, I had painkillers and was on the sofa desperately waiting for the oramorph to decide to do something and it did!!! – and I basically passed out again for about an hour and a half. Inside Friend said she was praying I would stay asleep a bit longer but could tell I was waking up, because I started making more and more moaning noises in my sleep. To which I asked if they were at least sexy moaning noises and she laughed and said, no, it was quite obviously pain moaning noises and ‘not in a good way’ and that I was also rubbing my foot more and more off the side of the sofa… So if I am doing that in my sleep when I am in pain, that maybe explains why I am waking up with it even worse! She also really doesn’t like feet, so I guess I can’t expect her to find that in any way sexy 😀 Still a bit miffed…

Brain fog is different off the meth; I still I have a desk completely covered in appointment letters and reminder and diary notes, because as much as my brain is a billion times clearer and my memory a lot better, I have waaaaaay too many very important doctor and drug things to remember. So the post-it notes and writing everything down and desktop stickys and phone memos are going to have to continue :/ Had to take pics of all the doc appointments to send to work as well, so at least I know they have an ongoing paper trail whilst I am off and I have copies on laptop now if I lose them! 😀 But yep. Short term memory still bad for ‘things and plans’ but I can formulate sentences and actually put the plans together a lot better!

Herval looks amazing in a scarf by the way…

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I got home about… A little over a week ago. I was initially obviously very excited about Herval and just breathing non-NHS air (probably it being all fresh and Lake-Districty helps!), but was also absolutely buggered. To the point where Inside Friend has been staying over pretty much every single night since busting me out and driving me back up, and she is basically doing everything for me apart from the bodily functions – and is currently washing my hair as I still have a tunnel line in that has to stay very very dry and clean! She deserves a freakin medal! Fave is also round a lot as well as a good bunch of my other best ladies, and they have been exceptionally good at agressively telling me off when I am getting over excited. Eg. every time I move or try and put the kettle on myself 😀 I am sleeping a huge amount more than I was in hospital but am finding – maybe because of being still longer at night?? – that I am waking up very very sore 😦 Not even with the focus being Death Toe! So all of the telling off is probably very necessary 😉 My parents came down and did a shift looking after me for a few days as well!! I had to go to an ENT check, which Mum was driving me to and I managed to get the wrong hospital *whistles innocently*… But we managed to turn this into a pretty sweet day out that involved a lunch – in an actual non-NHS food venue!!!! – and a pair of boots for xmas – that I was allowed to keep one of for straight away and it is the first shoe as opposed to sock or my Dad’s… lovely… sandals… I have got onto either foot in literally two months. The stupid methylpred water retention has now pretty much finished brutalising my left foot, so I can keep the left boot and the right one has been confiscated to wrap up for xmas as no shoe will be going anywhere near Death Toe until… Well ever I guess now, as I am assuming he will remain a dodgy sore shoe hater until it falls off! Death Toe foot is still a bit swollen, but I am guessing that is maybe the Nitro-Dur patches doing their job and pulling the blood down? THAT seems to be working anyway, as the big toe on that foot had an ulcer that had been bad back in – well a year ago now! – and although the ulcer healed up, the skin remained damaged. Whatever the Nitro-Dur is doing – or the influx of water damage???? – something has made the skin start to sort its act out. This is gross so sorry (notsorry) but it is basically making the area peel like some kind of icky toe snake and underneath is MUCH healthier looking!!! It is very satisfying to witness 😀

ANYway – look at my actual shoe/boot on my actual normal human sized again foot 😀 (Katie this is hopefully safe enough to have not put a warning? 😛 )

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The ENT appoinment was basically to see how I was getting on with the hideous level of silent reflux – the Dr who has now seen me twice, has basically again shoved a camera up my nose and down my throat and confirmed that the double dose of omeprazole they wanged me on in Addenbrookes (up from 20mg to 40mg) and 4x daily gaviscon need to keep going as it is still not fabulous at all… I may well be on all of this business forever haha – it is still REALLY bad despite upping these and I can tell within one missed dose of gaviscon (now that I have actually noticed it initially!) as my voice goes much more hoarse very fast. Dr I saw today actually noticed as well which must mean it is pretty bad as she has never commented on it before and I had only missed a dose by… a few hours at that point. I am going to be on a lot of medication for quite a long time, but one of the other very nice bits of news I came home from hospital with is that the pred appears to have never really done a lot at all for me. I was on an oral dose from the start of the summer when Death Toe was obviously kicking off – this is standard autoimmne flare protocol – and it was also at the time bridging until the meth I started then had a chance to work. When I was then admitted, the dose got wacked back up and some (I had tapered down and was juuuuuust about to breach the 8mg point!). Having reviewed everything, I think the thought is that it didn’t ever help – certainly I was feeling more and more crap each day despite the methylpred, which is a beefed up version of the oral pred… So maybe my stupid body just doesn’t like it? I get to do a nice fast taper anyway – thats the good news!! Managed the first 2.5mg drop four days ago without any big changes. Yes I had a few crappy days recently, but I have been having crappy days and good days on and off over the past few weeks anyway and there was no consistent pattern. So hopefully (assuming I don’t flare up stupidly badly – in which case I would be buggered!!!) I will be back down at the 10mg hover point by the end of Jan! Stupid pred. Cannot wait…

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Random arty asides to have a happy moment – so I got VERY excited about Christmas decorating when I knew I would be out for Christmas this year. I have firstly got a tree in the house, with a HUGE amount of help from Inside Friend, even though she didn’t seem to fully understand my joy for every step of the tree process… Including picking it with my own mysterious and strict criteria and smelling it… There has been a LOT of silly money spending on etsy (see above for my absolute favourite find of the year – in fact of life. Ever) – my tree decorating essentially consists of ‘coloured lights, no tinsel and all of the clashy awesome baubles’, with a couple of tacky ones for giggles and absolutely no coordinating allowed.

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But then the above happened. Because some of us can’t judge how long a string of lights is required… This has already given the support group posse a lot of amusement – I would say at my expense, but being a bunch of feeble tree incompetent buggers the majority of them had similar stories 😀 The pictures alone have been spectacular and made me feel a lot better haha! So the main theme seems to be when you are disabled, decorating a tree takes several days OR a lot of help. Mine is currently three days and counting – the short lights went on and it nearly ended me and then again nearly ended me laughing at what it looked like… Then one of my reluctant elf friends removed them for me… So I now have a naked tree again and longer lights that magical tesco elf men delivered, that somehow need to get onto the tree :/ I need some slightly more Christmassy friends but ones that aren’t also broken!! – and then I can get on with the very important job of spewing multicoloured fabulousness all over it!!!!

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This and the featured pic also happened not long after I came home – as much as I love my friends, I didn’t cry when I saw them much – I was too excited and yabbery – but I had a good little weep when I saw my dog buddy 😀 😀 Partly she was so disgustingly soppy and came and crawled into my lap – or as much as she could manage… She is MASSIVE – and then she was also doing what all of my dog buddies do and very delicately sniffing and licking Death Toe sock – so it either is a ‘this bit of Kath hurts, lets make it better’ thing OR Death Toe smells like an interesting sausage and only good manners stopped her chomping it off! Maybe I need to find a badly behaved dog… I have one more to go and see as soon as someone comes and drives me over to her and I am expecting to be equally teary 😀

Speaking of friends and arty stuff though, Fave is shortly to be updating her website (she promised!!) and in the meantime I got to see lot of her stuff and purchased a whole bundle of things from her stash from the art fair I had missed 😀 BEAUTIFUL THINGS!! To clarify, I didn’t buy a radiator, but she recently decorated it for another local lassie and it worked pretty bloody well I think!

Another buddy has started a worm business – she has a LOT of happy Tiger worms, which we discovered we are both equally dweeby and excitable about – self-confessed so you can’t be mad Bex! 😉 – and I got some as a late birthday gift and they are awesome and the only sad thing about all of it is that it is quite hard to individually name worms that don’t want to be seen in the light and all look quite similar… If anyone decides they also want some, you can keep them in a celebrations tub like me and give them kitchen waste and talk to them every day, or you can pop them into your compost heap… But they do have babies – apparently quite regularly – and so my friend is selling them at the moment (maybe the sudden demand from my share will overwhelm her supply!!!) at the following link Happy worms to be your new kitchen pets hehehe! Dad – spoiler alert, don’t buy any, you are already getting some for xmas 😉

Lovely quote from another arty friend re me getting excited about all the crafty things – made me smile for hours – “Life has given you foot lemons and you’re gonna make mega arty lemonade!!!” 😀 [Love you missus!]

In other Kath arty news, I am still knitting but not started the second mitten yet! Got distracted by this beautiful squishy wool and have been making myself a phone cosy… I ordered an amazing new phone case that has narwhals on the back and although it is wonderful, it doesn’t really protect my phone much :/ So squishy phone cosy has been made for lobbing phone into handbag etc! Also has given me a chance to perfect moss stitch – very very easy once you get started with it. Generally finding I can handle learning new knitting things as long as I take it slowly – and the biggest problem I have is with my short term memory being so brain foggy, so I forget what I just did – and still not brilliant at telling from looking at the stitches!! I knit too fast for writing it down to help either as it just slows me down, so anything other than a quick tally mark after a long row is very annoying!

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Its like pink squishy spaghetti and I love it!! I finished the rest of the knitting part today when I was in getting blood tests prior to the second dose of rituxumab a bit later this week. THAT whole thing was a bit stressful. This morning work came round on a ‘welfare visit’ to basically check how I was doing and run through the current doc appointment situation and fit notes and give me a chance to sign the consent form for the occupational health assessment etc. Was actually quite nice to catch up with them 🙂 and then they were lovely enough to give me a lift to the hospital as it isn’t too far from the office. All I had actually achieved this morning was waking up, brushing teeth, eating some scrambled eggs, taking the drugs I had already put into a pot and then talking to work colleagues for an hour… and I was BUGGERED. That is the sad sorry reality of autoimmune things – basic life stuff and a conversation can absolutely knacker you. It really isn’t any wonder I was so angry all of the time in hospital when people wouldn’t leave me alone haha 😀 SO then I get into hospital and get a porter to take me to the Rheumy base and subsequently sit for HOURS waiting for bloods and urine results… Good thing I took in knitting!! Nitrates in my pee was the first lovely treat of the day, but clearly nothing too dramatic as it was followed up with full analysis and nothing was said…. I (maybe stupidly and quite unlike me!) didn’t really chase it up but they let me go without antibiotics – I think they were more distracted by my DERANGED LIVER FUNCTION that showed in my bloods 😀 best phrase EVER! – but again, didn’t get the actual levels :O Very unlike me… Maybe this is terminal???!!!! (Joking people, calm down!) So the upshot is I am getting rituximab dose two on Thursday I think… but also have to get urgent liver bloods done Thursday morning. In a weird way I am actually quite excited – I know that sounds warped but I have never had any raised levels before and it might actually help Addenbrookes pin down a diagnosis more clearly…?? I feel like shit at the moment anyway so the only surprise is that it is finally showing in my bloods. Is that all a bit weird? It probably is 😀

It has been a while obviously since I posted and I don’t intend to be quite as ranty hopefull going forwards – I think hospital and maybe the ‘roid rage brought out the worst in me 😀 Certainly I scared myself a bit with how angry I was! I have never been that angry at strangers before and probably a lot of it is not being able to get away from them or have any personal space… But yep I really didn’t like feeling that way!! Anyway, thought you all might like one more proper ‘Kath in hospital’ rant 😀 I was going through saved docs in an attempt to make sure I have all of the doctor appointments saved to send to work and found this. I saved it at the time as I was probably feeling too mean and I was reviewing it at about 3am from what I remember, but it had upset me too much at the time to delete it. Now looking back both feelings are suitably distant!

“I just reached a new low even for me… The eldery woman with seriously bad alzhiemers who is full of plague germs and snots all over everything was just getting told her birthday was next month and she had to behave so she was out for her birthday… So she started getting very upset and wound up about being in on her birthday and my thoughts were not ‘poor woman, she might be in on her birthday’ but the unfortunately mean combination of the following: a) she wouldn’t have had a bloody clue if you didn’t wind her up about it and b) mine [I meant my birthday] is in… bit over 10 days and I’m looking guarunteed to be in here [HA! I was in hospital but I was at least at Addenbrookes by then! Kath-win!!!] and b.1) I’ll KNOW IN ADVANCE b.2) I’ll REMEMBER [ouch – harsh Kath 😦 ] and b.3) I’d usually be doing much more fun stuff than sitting opposite the incubator of the black death with my toe rotting off… [HARSH!!] But then maybe you get extra morphine on your birthday tho yep?!” [didn’t… but did have a lovely birthday and not like anyone is short changing me on the painkillers, so not complaining NOW! 😉 ] Haha I actually really really liked that woman – she was the one that was so polite to everyone and she used to be a nurse herself, so her and all of ward staff got on fabulously!! I was more mad at her family than her, but calling her the incubator of…. Ahh yes the black death! Was in response the the excessive sniffing and coughing that was driving me utterly insane!!

Anyway. I basically need to go pick up a lot of drugs tomorrow AND then spend two hours with my head in the drug box again as SOMEONE forgot Christmas was coming and that I will be up in Scotland for… a while! SO I need a lot of drugs. [So many drugs. The level of drug taking has now reached disgusting levels. I also get to inject myself once a day 😀 ] Many more than I ordered yesterday when I proudly filled my new four compartment a day drug organiser [it is pretty awesome!]  Stupid Kath!!! Oooooo I also started warfarin yesterday – had my first ever INR appointment and the nurse is SO lovely!!! Got a follow up on Friday but my level was exactly within expected for a first test – 1.0 in case anyone cares or knows what that means – and my target is 2.5 so I get a daily pill to take to raise it – and a higher level means my blood is clotting SLOWER (just to be confusing) which is what we want!! The very sad bit is no more cranberry juice ever again as it has high levels of vitamin K and is particularly dodgy for affecting INR results. Poo!! I did coincidentally have a glass of fizzy cranberry and raspberry the night before, which now feels like some kind of magical fatalistic farewell!! Also met the practice nurse who will be in charge of Death Toe – at least every now and then to check the little bugger – she has THE BEST DRESSING CUPBOARD EVER and the fact I am excited about that means I need to stay away from hospitals haha – but yep she was also very very lovely. One of the nicest things about both of them was that they properly respected what I will bluntly call my intelligence AND my wish to be involved in my own care. This was one of the things that was increasingly upsetting me during the first part of my hospital incarceration; the feeling that I was being ignored or dismissed as being a hypochondriac – and then as someone who was getting paranoid, when actually I wasn’t getting referred when I wanted – for WEEKS – and I wasn’t getting the drug I wanted… I don’t know if there is a seperate discharge somewhere I haven’t seen that said I have been a demanding patient anyway, but I have spent the majority of this year dressing the stupid toe intermittently between podiatry appointments and then looking after it a lot in hospital/since being discharged, so I have worked out fairly well what is comfy, what works etc…. Basically I think they are both my fave two new nurses 😉 Subtle flattery gets you everywhere haha – maybe they are doing it intentionally for Christmas sweeties??

Whilst I remember, we were having mega discussion online the other day about getting access to notes – it is NOT mentioned anywhere obvious on the patient access portal, but I checked with my GP and found stuff out!! – the girls were VERY helpful! In the past I registered for Patient Access but had only asked to see repeat prescriptons so that is all that was added and it doesn’t make it clear on the portal what else is available. I had only needed one form of id to do that and was given a log in code to add when I registered online. When I asked on the phone, I can take in two forms of id and then fill in some forms – needs extra forms because so much access to my details – and then they will add all of the notes (in at least their computerised form) to my patient access portal. [Have already done this and waiting for it all to be added now!] To get hold of a copy of my paper notes in full will cost 50 quid, but they also said I can go in and talk to them about anything I am not sure about and make an appoinment to look at the paper notes (under supervision) without having to pay. This may help me for example, as all of my notes from Scotland are in paper form and were just summarised onto the computer when I registered in 2011. I do want to get hospital notes in time, but waiting until I get paid 😉 and maybe one at a time as its not like they are going anywhere and I’m aware it might be quite emotionally upsetting/tiring!

As another little Kath-brain aside, if anyone remembers me going mental about the body shop shampoo – the rainforest shine one – I used to wash my hair every day pretty much but because of being so knackered when doing stuff AND the tunnel line needing to stay dry, I need help to shower my hair at the moment and this has meant less hair washes… and the shampoo is frikkin amazing and my hair is not greasy and has remained curly with awesome little corkscrew twizzles… So yes, another major love splurge for that shampoo! Although to be fair, not sure who else has hair as mad as mine to reap the benefits…????

As a final final aside (promise!) the major downside to having the ladies round so much at the moment is that the tub of celebrations that was for emergencies pretty much vanished in the space of two evenings (it is now full of worms haha!!!) – except for the BOUNTYS!! WHY WILL NO ONE EAT THE BOUNTYS???? I found this – yes my brain made me google ‘why does everyone hate bountys?’ –THEY ARE SO HORRIBLE! and yep they are basically the sweets that always gets left in our house for Dad to eat. I don’t even know if Dad actually likes them, there is an awful lot of food stuffs that always gets left in the safe knowledge that Dad will NOT let it get wasted 😀 More chocolate was delivered by the magical tesco elves. This is bad. We have all synced cycles [that means true love!] and we are all glaring at the chocolate and it is like some sick kind of chocolate prison in my house at the moment. Someone come and REMOVE some for a change yah????
Ahhhh. Ending!!! In summation, being home = awesome. Friends = awesome. Tuna and cheese and gnocchi = awesome (missed them so much!) Friends’ dogs = awesome. Magical Toe Healing Quilt on the sofa with a cup of tea and a laptop (legs are both raised and yet not hyper-extended Mother, calm down!) = awesome!!!!
EDIT: records already on my profile and the android Patient Access app is fab and very user friendly! And…. Tada!! It only took us about four days 😀

I’M FREEEEEEE!!! 😄

EDIT: So I HAD a featured picture that was something to do with sweetie wrappers and managed to completely lose it… It had amused me, as one of my Aunts has a cheeky habit of throwing sweet wrappers over her shoulder in her sisters’ cars/houses but if you want to see her seriously lose her cool, just put a single empty wrapper back into a tin of quality street at Christmas 😄 My NEW featured pic is one that always makes me quietly happy, of a lone wonky tree on a common near my home. I took it two summers ago on a particularly happy day as I had managed to get to the top of the hill 😛

So… Yes I am no longer incarcerated! I actually started writing this on… Tuesday? and was feeling variously awful all week and then started getting teases of a weekend release and didn’t want to jump the gun in terms of exciting either myself or friends/family! Currently in the car on the way up the M6, having been picked up from Addenbrookes by Inside Friend (of other hospital fame) last night 😄😄

EDIT: Now currently on MY SOFA AT HOME – with Inside Friend still here, sitting on the floor next to my GIGANTIC UNICORN LAMP THAT HER AND FAVE GOT ME AS A HOMECOMING PRESENT 😀

It changes colour, has a remote control with several different flashy functions and is basically everything I ever wanted a giant unicorn floor lamp to be!! Not currently named, but favouring Herval at the moment… Planning to sleep on it, so any genius name ideas please lob them at me!

EDIT: Went with Herval 😉

But back a few days, as Kath and Death Toe didn’t magically time travel from Monday and a ridiculous amount has happened since then 😛  I waited until I had actually had the magical drug before updating everyone, as I was VERY wary of getting too excited as I have seen a LOT of people in the last eight weeks being told they were going home and then the doctors changing their minds due to dodgy blood tests or BP :/

Tuesday I felt hideous all day – it was the last planned day of (five of) the plasma exchange; I did very little all day and k.o’d for me ridiculously early, feeling very unwell and out of it. My blood pressure was taken in the middle of the night and had dropped down to very low compared to my usual high end readings – e.g. sometimes its as high as 150/110 for me (obviously not great and why I am on A LOT OF DRUGS) but Tuesday middle of the night it was more like 100/50!! Turns out I felt so bad as my fibrinogen levels had dropped again Tuesday, so when this test flagged up from the evening and my bp was being ridiculous, I ended up getting cannulated at about 2am – it took four attempts due to my stupid veins – and had another bag of cryoprecipitate lobbed at me to fix it. I remained very woozly all day on Wednesday really, ie not very responsive when talked to and can’t really remember an awful lot of most of the day :/ Check the bruises I took away as a momento!… MomenTOE 😀

It was bloody cold that morning as well, as for some reason the heating was off but the air con was on..??! Now it is normally VERY warm in the ward but after eight weeks in wards with older people I had adjusted to this. Waking up in a very chilly room, after a difficult night of being ill and having cannula stabbings and bags of iv drugs was horrid. My joints are flaring anyway at the moment since being off any kind of immunosuppressant, but the cold makes them a LOT worse and most of us in the room could barely move Wednesday morning. An example of how ridiculous this is, is that they were taking my blood pressure most mornings at about 6am, which necessitates taking off an arm warmer so my wristband is exposed. Unless I put this back on and tuck my arm back under the blankets, I wake up and literally cannot move that arm for a few horrible very stiff minutes… Like the whole mri incident!! I also need physically moving to sit up at this point if I am taking any medication – i.e. the nurses have to use the bed controls to raise the bed behind me more upright and/or support me moving to an upright seated position. This happened a lot! So most mornings, I always started doing my warm up wiggles then and taking paracetamol and oramorph at this point as well, so when it got to breakfast I was usually functioning at normal speed… albiet something like a crab… 😄

My feet were still humungous on Wednesday, which given I finished the methylpred on Saturday night has been bothering me a lot, as surely at some point they have to start getting smaller??? I have since been prescribed a water tablet to essentially get my body to pee out some of the retained water faster, but have also noticed that the several kg I put on in a few days (which pissed me off no end!) has almost completely gone again. So with my feet and ankles still very swollen (although better than Wednesday!) there really must have been even more over the rest of my body than I had been aware of – I guess I was focussed on the feet as they were – and remain! the most dramatic! and sodding painful 😦

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On Wednesday I saw the vasculitis team again, including the consultant I was referred to after so long.  He had been looking at everything and decided that it was appropriate that I start rituximab – this one being a biologic drug and my drug of choice for quite a while. His first instinct would have been cyclophosphamide as it is broader working – and without postive blood tests my mish-mash of symptoms are a bit of a vague thing to work with – but because of my age and cyclo causing infertility (as in previous posts!) the team were happy to go with trying rituximab. This was both incredibly gratefully received and very reassuring, esp when he said it was given the amount of cases he has seen over the years with no postive immunology blood results like mine that can end up responding well to it (also as known about through the support group). It can take up to three months to be working fully but apart from needing to keep me in overnight in case of a bad reaction, there was nothing further that had to be started immediately, so I was allowed home!!! I am still considered pretty ill and pretty unstable disease wise at the moment and will be back down for a review there in about three months time, but all of the blood monitoring and the second dose can be administered at home as an outpatient 😀 This was amazing timing, as Inside Friend was already planned to be coming down on Friday for a visit!

As far as I have gathered, there are two things going on: firstly a coagulation problem, so I will need warfarin (due to start shortly as it had to be arranged up here) and will probably be on this for long term. This needs very regular blood monitoring, but I can do that through my GP, who thankfully is based about 100 metres from my house and I have friends that are willing to drive me even tiny distances, because they are AWESOME. Until I start this, I am on daily injections of dalteparin as a bridging therapy – the same one they give you in hospital (see also clexane as an alternative) and I have my own sharps bin now which makes me feel like a proper druggie haha 😀

Secondly, the vasculitis disease part, which is causing inflammation to my teeny tiny blood vessels, which is what the rituximab is for. I have had it confirmed that I can start tapering down the oral pred (steroids) pretty much immediately, as my current dose is high enough to bridge for the ritux to start working and I get the impression he wasn’t convinced I’ve ever responded to pred a lot anyway. Apart from to sweat so much from my head it looks like I’ve just had a shower… Delicious. So will taper from 30mg to 10mg daily  and hover there for a bit. The taper will be pretty darned fast – 2.5mg a week!! – so wi ha Long term I’ll be reviewed down at Addenbrookes maybe every six months until stable, with very regular warfarin bloods checked through GP until they stabilise as well. After the first three doses of ritux if its working I would either be classed as in remission (!) or need to have maintenance doses maybe yearly depending on how I’m doing!

More info on the drug itself – anyone who cares what I spent six to seven hours being plugged full of on Thursday and what will hopefully be crushing my B cells and slowly starting to slow down the disease… Please see link! The longer term plan is that it will put the disease into remission 😀 Rituximab Info….  I had a bit of a giggle – Fave was googling rituximab (becauses she is awesome and I love her) and noticed it has the brand name Mabthera 😀 See the Queen Mab monologue below from A Midsummer Night’s Dream! Always one of my faves… Bringer of dreams they call her – bringer of absolute tragic level floop and looking horrendously like a sick person I call her!

It is not a chemotherapy drug in the same way that the MTX was – it falls into a class called biologics – because it works in a different way, but it IS used in cancer treatment; it will hopefully be more targeted in terms of deactivating and removing the particular bit of my immune system that doesn’t function properly and not carpet bombing it entirely! It WILL leave me more open to getting infections and bugs, just not to the same extent, but if people have sneezes etc., please be considerate and stay away 😉 Working from home is already a bloody good start, as we all know how quickly a cold goes around open plan offices!! I will both be more susceptible to getting sick AND find it a lot harder to shift bugs and infections. This is maybe partly why I was kicked out of hospital asap once I’d had an overnight watch period, as I will be a lot ‘safer’ at home as it is a much more controlled environment. Hospitals – no matter how much they get cleaned every day – are riddled with sick people!!

The actual getting of the rituximab involved making the existing cannula behave for long enough to administer a load of piriton type thing and whopping syringe load of the devil that caused my giant fat feet – methylpred – to reduce the likelihood of a reaction to it. Very rare, but they still have to be careful I guess! Initially the ritux was hooked in through my cannula, but the line kept occluding and beeping and generally being a pain in the arse, so we hooked up Hendricks III and I spent a total of seven hours ish… getting that bag of goodness into me. To the point where I squeezed the last few minutes out of the bag 😀 It is sodding expensive – none of that is going in the waste!!

To celebrate the ritux I had a properly fabulous chai latte again – think I got a bit addicted!! Good thing there are none anywhere near me 😀

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I also had a few more bits and bobs of post – some amazing chunky pink squishy wool that I intend to knit into a ridiculous scarf once the second mitten is finished – and some little charm dudes, one of which was a present 😉 and the other two very firmly for me hehe! I received an absolutely lovely note with the wool, as the  vendor had clearly realised I was in hospital and she included some stitch markers and buttons for a little freebie!!

I am NOT being in anyway asked to promote ANYTHING in this blog – I keep meaning to add in some kind of disclaimer haha – but I believe in credit where it is due and both of the above have shops on etsy and are fab in terms of customer service and quality of the items 😀 The wool is so squishy…. SO SO squishy!!!

The toe is the remaining factor in all of this. On the day I was discharged (Friday), I saw one of the vascular team who seemed a bit surprised at the basic questions I was asking and then quickly realised HOW freaked out I was about the whole falling off (as opposed to amputation) situation. She explained that it is looking like much longer than the weeks someone else had suggested – more likely a bit into the new year, which will need to be reviewed by local GP in terms of leave off work etc. – and that although it will be very painful around the actual splitting off area, as it is at the moment, she confirmed with a series of pokes (that made me want to hurl 😀 ) that yes, the black bit is completely senseless now and the nerves are very much on their way to being dead. So it will basically shrivel and slowly get smaller and smaller and one day just sort of crumble off like a twig! Her EXACT WORDS! It is boggling my mind that this is happening to a toe that was perfectly functioning nine months ago. As previously stated, I have had to sacrifice one toe on the altar of fannying around and it can only be hoped that now I am on the rituixmab and have a team who specialise in whatever stupid type of stupidly rare stupid I have, that no more toes decide to be idiotic. Or fingers. Don’t think I would deal well with a finger falling off 😦 Speaking of, mine are all currently numb and sore and have damaged bits that aren’t healing but one in particular has decided to be very cold and dusky for weeks now so he is MAJORLY on the watch list -.- Anyway. I can’t get a shoe on EITHER foot at the moment due to the size of my giant fat oedema-fied feet and ankles, but am expecting I won’t be hobbling much more than to the kitchen or the loo for a good while anyway due to the general state of me 😀

As soon as my warfarin levels are stable enough (cross fingers please this happens quickly!) I am going up to let Mum smother me in Mum care. Until then, I can’t go up to Scotland, as I need to be getting blood tests very very regularly, need the second dose of rituximab, need the tunnel line taking out (not expecting to enjoy that!) and need some follow up appointments with rheumatology, ENT and opthalmology. Inside Friend is planning to spend a lot of time here at least initially, to make sure I don’t knacker myself out and let the rituximab do its thing and I know this has made my parents feel a LOT better. To be honest, without having to worry about work immediately, I am planning to just focus on doing very little and get my strength back. I have also asked for a physio referral as even if I can’t walk far at ALL – and look freakin hilarious when I do walk anywhere – I have also lost a huge amount of strength in the rest of me.

Once this stupid toe has fallen off I am actually DROOLING at the thought of possibly being able to swim. If the ritux works… and no more sore digital ulcers, joints and muscles that aren’t screaming… then I can maybe start swimming properly again 😀 😀 It has been a long time since I did regularly, but two years ago when I was trying to sort out my physical health and weight etc. was when I also suddenly started feeling awful and my toes and fingers started trying to die. The last time I did try with some of the girls on a planned relaxing day out, I got excited and did a few lengths at my normal whip pace and then flooped super hard and pretty much fell asleep in the pool… Decanted quite quickly to the jacuzzi on that particular day. Which is AWESOME for sore muscles, but again not so great when you have ulcerated crap dying digits.

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Moment of appreciation for International No One Actually Seems To Listen To The Drs, Nurses And Ward Staff Day…. A final smidge of ward life as typed up when still incarcerated!!

This is really terribly sad because the person concerned is very upset… And I don’t have to restrict cups of tea and I can appreciate that must be tricky… BUT! How does someone who I had pegged as quite intelligent, not realise that four cups of tea so far, milk on cereal and custard count towards a fluid restriction?! A very very very serious fluid restriction that was been explained thoroughly at the point of being set in place, including very clearly that everything counted – I HEARD IT FROM THREE BEDS AWAY!! – and then checked at every single cup of tea/meal etc. so far? So the person is angry and upset that they only have half a jug of water for the rest of the day and have to take meds using that as well…

For anyone in future on a fluid restriction: I cannot imagine how tough and frustrating it must be. But don’t be surprised about cups of tea etc. counting towards it PLEASE!! – and don’t be angry at the people trying to stop your kidneys EXPLODING!! Also… IF YOU ARE TOLD TO MEASURE YOUR PEE, THIS IS VERY IMPORTANT!! “It was just a small pee” is not sufficient… *massive face-palm*

A final ranting about my nemesis as well 😀 Shame to waste so much irritation and angry-Kath to the backspace button hehe….

My nemesis has been driving me insane still – she has decided she has a horrible barking cough ‘like a giant dog’ – she basically coughed TWICE Wednesday morning and has not shut up about it since. She ended up seeing two doctors and several nurses that morning and in the retelling it has since turned into her being unable to breathe for 40 minutes and hyperventilating on the bathroom floor!!! Also she doesn’t listen to a bloody word the Drs are saying… Such as them telling her that she has been started on medication for reflux as well as stomach protectors. Earlier, after feeling queasy (very vocally and full of conversation) for a few minutes she escalated into having dramatics and saying she had felt terribly ill all morning and it was because of all of the drugs, because she had to have them without food….. Ehhhh no!! You were given your breakfast first as well as the new stomach protector dose you are being continually told about – and saying you feel queasy one minute and turning it into something like that when the woman literally opposite you is being sick quietly and continuously is sodding thoughtless.

Every now and then I feel horrible and was literally just about to label myself a massive hypocrite (as I too am prone to dramatics when e.g. my feet are still huge!) and a bitchy nasty person aaaaaaaand then just heard her calling the very patient and lovely Dr who is repeating herself many many times to try and reassure her, a ‘foreign Dr…’ – she has a VERY FAINT accent suggesting she has Indian family but there is NOTHING to indicate she isn’t British – I can’t handle it >.< [On Thursday] I just had another morning of non-stop being talked at – had laid down flat to have a ten min doze after meds and once my bed was made up – and had ‘Kate Kate Kate Kate are you ok?’ – Ehhhh I was until you woke me up! This is why curtains stay closed as much as possible – the SECOND they move back I get yapped at. It is well meant, in that she is worried because I am lying down and is concerned I am unwell… But I am in a hospital being plugged full of meds and look like a sweaty mess so yes, I am likely at somepoint to want to lie down on the bed I am hardly leaving :O SHOCK HORROR!

….It might be a race betwen us going home… 😄😄😄 And some genius has now given her a cough syrup which tastes horrible so she has something new to bitch about… Rather than be grateful that it will fix THE COUGH – and then also she has just been told she can go home this eve which is great for EVERYONE and she is instantly fretting about the pharmacist having not brought drugs yet… TEN MINUTES LATER 😀 They have to check and order and fetch and it isnt frikkin magic 😀 😀

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She did get to go home Thursday evening. We had a lovely parting moment, whilst she was waiting to be discharged; seeing her having a round with some med students: she was supposed to role play as she was when she came in a few days ago so they could diagnose it and started off with ‘I came in with a urine infection’ 😂 which completely scuppered the whole point of the exercise!!!! 😄 Beautiful!!!

This arrived as a present from my oldest and Beariest buddy on Friday – so sadly the day after she went, which was probably a good thing, as I would have died trying not to use them obviously… Note also the unicorn goodness haha 😀

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Aaaaaand scene! I can now hopefully go back to my excessively sugary sweet delightful self… A person who wouldn’t DREAM of bitching about a sick older lady 😄 I blame the drugs. Don’t do drugs kids! Stay in school. ‘K.

Some other very exciting news is that my replacement needles arrived after snapping one of them literally minutes after finishing mitten one… With only the fish to bubble at me I can at least knit in peace now!! I am also loving the first Harry Potter audio book – had another few chapters last night and got it on the go at the moment – as long as I put the chapter on repeat, it doesn’t matter if I doze off 😀

THE GREAT ESCAPE!!!

I will keep the finale short and sweet. Inside Friend came down a ridonkulous way to come see me – this was already planned anyway, but then once the discharge teasing started, we formulated a rescue mission plan in the event I was allowed out 😀 I spent the majority of Friday feeling like death on a stick after the methylpred/ritux wallop from Thursday. Ie sweating so much it looked like I had just showered. I felt grim… and really really grumpy!! But then the pharmacists appeared and started tallying and ordering drugs with me… and Death Toe and Hendricks III were redressed… and the vascular Dr and one of the vasculitis team came to talk through follow up care and appointments… I was all packed up with a RIDICULOUS amount of stuff and wheeled in a bit of a daze down to the discharge lounge before I really gathered my brain! I think because I was trying so hard not to get let down, I also didn’t let myself get excited! So then I was super giddy in the discharge lounge 😀

To celebrate and thank Inside Friend for rescuing me, I sorted us out dinner at the fanciest restaurant I could find and it was AWESOME – the food was all amazing and even though I had weird beige hospital socks, no shoes and looked like I had crawled out of a sewer, the staff gave us a lovely little booth and were very very nice – in a place where everyone else was dolled up and in suits! 😀 I was amused!

We got teeny tiny hot fresh loaves – see above – amazing foamy things with bits in – I can’t even describe the mouth party!! Dessert was a lemon curd and white chocolate fennel concoction… After eight weeks of hospital food it was absolute bliss 😀

The other fabulous ting was hearing properly about the art show my Fave had put on the other day, as Inside Friend had helped her with that. I am so super ridiculously proud of her!!

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The above is my birthday card, which features a lot of rude words and drawings inside, so I thought it best not to share, but the cards were a new design she has brought out fairly recently and it was the first time I got to see them 😀 SHAMELESS PLUG – Fabulous arty tings!   She also has a whole load more watercolour work that she has worked on very recently and I need her to UPDATE HER WEBSITE WHEN SHE HAS TEN MINUTES TO FEATURE IT ALL 😀

I spent the night in a Holiday Inn ten mins away from Addenbrookes, talking my head off and flooping mid-sentence with a very full tummy and a very happy heart. I still have a stupid amount of sweets and chocolate left. Don’t give people in hospital so much food, it is really hard to eat it all!!!  Breakfast had both scrambled eggs and sausages and KETCHUP and TINY MUFFINS – I stole some which we carried in a poop bag… Then we road tripped the massively long way back up and sang and blethered and I got home to cake and MY GIANT UNICORN – a film with my faves!!- my fave dinner and loads of post and it was all flippin awesome and now it is bed time 😀

Happy Kath!!!

MERCUTIO: O, then I see Queen Mab hath been with you.
She is the fairies’ midwife, and she comes
In shape no bigger than an agate stone
On the forefinger of an alderman,
Drawn with a team of little atomies
Over men’s noses as they lie asleep;
Her wagon spokes made of long spinners’ legs,
The cover, of the wings of grasshoppers;
Her traces, of the smallest spider web;
Her collars, of the moonshine’s wat’ry beams;
Her whip, of cricket’s bone; the lash, of film;
Her wagoner, a small grey-coated gnat,
Not half so big as a round little worm
Pricked from the lazy finger of a maid;
Her chariot is an empty hazelnut,
Made by the joiner squirrel or old grub,
Time out o’ mind the fairies’ coachmakers.
And in this state she gallops night by night
Through lovers’ brains, and then they dream of love;
O’er courtiers’ knees, that dream on curtsies straight;
O’er lawyers’ fingers, who straight dream on fees;
O’er ladies’ lips, who straight on kisses dream,
Which oft the angry Mab with blisters plagues,
Because their breaths with sweetmeats tainted are.
Sometimes she gallops o’er a courtier’s nose,
And then dreams he of smelling out a suit;
And sometimes comes she with a tithe-pig’s tail
Tickling a parson’s nose as ‘a lies asleep,
Then dreams he of another benefice.
Sometimes she driveth o’er a soldier’s neck,
And then dreams he of cutting foreign throats,
Of breaches, ambuscadoes, Spanish blades,
Of healths five fathom deep; and then anon
Drums in his ear, at which he starts and wakes,
And being thus frighted, swears a prayer or two
And sleeps again. This is that very Mab
That plats the manes of horses in the night
And bakes the elflocks in foul sluttish hairs,
Which once untangled much misfortune bodes.
This is the hag, when maids lie on their backs,
That presses them and learns them first to bear,
Making them women of good carriage.
This is she!

Bringer of dreams…