Kath goes back to work, gets wacked on lemonade and Voldetoe gets the chop!! (…ish. Ok, not so much). ***HEALTH WARNING: Pic of toes – not too manky***

This week is week two of Vasculitis Awareness Month and it has been truly lovely to see so many people getting involved in sharing snippets of their daily ups and downs whilst living with this disease. Lovely in a weird way, as it obviously isn’t at all nice that so many people have hidden struggles, but the way some people find nuggets of optimism or fun is downright inspirational.  A lot of the quotes made by Kelly for us to all share are based on finding positives and celebrating the strengths we have, rather than sinking into a pit of gloom when we are knackered or in pain… Below are some examples! You can pinch any that you want…

 

 

On the theme of awareness, Little Broo and his lass have been hitting the streets doing a bit of fundraising for the Vasculitis UK charity, in advance of their upcoming efforts at the Edinburgh Marathon at the end of May. He wants me to make it clear that it was 90% her doing, as he was at work and joined her afterwards… An amazing £170.32 was raised bucket rattling in one day – starting at disgusting o’clock in the morning (6am) to get commuters on Cannon Street station in London! One wonderful gentleman gave her £20!

***PICTURE OF VOLDETOE A LITTLE BIT FURTHER ON – LOOKING QUITE GOOD!***

Fun things recently have included being told my INR levels – still being tested through the Finger Prick of Joy – are behaving enough for testing to move to fortnightly!! My only blood test this week was therefore for EVERYTHING for my consultant to check on. Things don’t look too bad at all – my CRP and LFT’s are a little bit worse than they were in March, but… I have dropped pred and have not had a dose of chemo last month, so I can understand that really. The one that looks a bit iffy to me is the high red blood cell distribution width vs low mean corpuscular haemoglobin – one being higher than ever for me and one being lower than ever. Not exactly massively excitingly so, but general trend would indicate I am possibly anaemic, despite taking ferrous sulphate on a pretty regular basis. To pacify anyone worried about my tendency to poke my nose into my blood test results and then visit the internet, I like learning how I work and, more importantly, I won’t be panicking or doing anything exciting medication wise without my consultant telling me to 😉 He did recently suggest I could stop the ferrous sulphate so this would maybe suggest otherwise!!

**Edit** Consultant is perfectly happy with everything – I was looking at a breakdown with excessive detail, but the overall picture is not concerning him at the moment.

Last week I got to see my favourite podiatrist (my only one as well!) for a catch up. Mainly to show her Kevin to be honest; she last saw me before Christmas whilst between admissions, when Death Toe was an absolute state, but still attached. She had a good check over everything and agreed my toes look the best they have done since I very first saw her, over two years ago now. Yay for drugs! Voldetoe is the only one still being a poo. See below… She lopped a scabby bit off that was catching on my socks and basically said I was ok to keep going as I am, and just to get in touch asap if anything starts to look suspect or changes quickly. For anyone who remembers the epic blue mottling, look at the difference! Only that one idiotic toe is still a vaguely blue shade all of the time and nowhere near as prone to being ice cold or painful. Good times!

 

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Voldetoe – look how much better he is!

 

This month was the start of me going back to work after many months off; so far it has not been too traumatic! I had many hundreds of emails, have had to change ten billion passwords and had to get IT to help me hack onto my pc at home, as it needs too many layers of passwords to connect to the network to be happy with anyone who had recently reset everything… It was quite exciting; made me wonder if professional hackers spend all day – night… Squeaking in glee at their own (IT’s…) cleverness.  So yep, phased return is going nicely. I haven’t collapsed dramatically or anything, and have remembered basic things like how to use a mouse.

The following isn’t technically anything to do with work, but a good sign that my brain is feeling more alert… There was a recent post in the support group discussing how to drop daily pred doses at a rate that people can manage, without suffering from walloping fatigue and joint/muscle pain as a physical backlash. It made me curious, so I had a little dig and tried to find out a bit more… It is a lot easier to reduce the dose at a faster rate if you haven’t been on them for too long at a high dose, but for some people that is sadly not the case. As well as a whole host of delightful side effects (moon face, insomnia and general weight gain and bloatiness (a real word from now) to name but a few!), long term steroid use suppresses your body’s natural steroid production. Cortisol is the human body’s natural equivalent to prednisolone, produced by your adrenal glands in response to illness or stress. For this reason, at around 7.5mg (depends for each person) you need to slow down the taper to allow your adrenals time to activate and get back to normal production. Personally, I noticed a sudden increase in energy (don’t be excited. I mean less sofa hours per day!) at around the 6mg mark, which I would like to think was possibly the point at which my adrenals got back into action, thus making me extra steroided up in an overlap situation (also a real phrase). Not exactly sure it works like that, but funnily enough, googling ‘extra steroided up’ doesn’t produce many peer-reviewed results 😉

ANYWAY: I made a spreadsheet 😀 I realised from this particular post that a lot of people who get to the 7.5mg (approx.) mark need to start tapering slowly (which I already knew), AND need a system to help remember where they are each day dose wise. One of the admin has previously told myself and others about a system she calls ‘dead slow and stop’ which has worked for a lot of people, particularly when dropping after a long time on higher doses, or if they are struggling to get below 7.5mg without repercussions. I volunteered to have a crack at making something to help the author of the post and my brain WORKED!! Also it meant playing with formula a tiny bit on excel, which alternates between being my most hated thing in the world and the source of hours of joy and faffing. Ta daaa! I love having outbreaks of dweebiness 😉

Dead Slow and Stop method from 7.5mg

 

 

The above and below were taken on the east side of Coniston – first proper BBQ of the year and a wander on a very nice sunny evening. Felt so good to be able to walk and carry things, and to not be in pain the entire time, or wishing I hadn’t said yes!

 

 

We also found a friend, who I named Eric.

 

 

Despite how awesome it has been to be able to get out and about more, I am definitely overdoing it with the walking/general ‘doing a thing’ some days. I am finding it very hard to settle on a consistent level that doesn’t leave me on the sofa whimpering the next day. My body really wants to move now – I am getting urges to dance and wander to the park. Some days I have two GP appointments and the walk down (maybe 100m?) used to have me in tears or asleep in the waiting room, but I am now managing there and back pretty easily, unless I am stiff from the day before. Today for example, my back is very sore and my ankles are stiff and sore, because I overdid it yesterday. I took it easy today and hopefully should feel up to careful walking again tomorrow, but it is hard to up your levels of activity whilst restraining yourself so you don’t end up a whimpering mess on the sofa :/  Some days it feels like my hip is trying to pop out >.< Knees are so much easier to crack with a gentle stretch… The only thing that seems to help move my hip back to where it should be, is some kinda of Pilates warm up back roll I learned a long time ago off Mum.

The exercises the physio has given me are largely based around strengthening my upper leg muscles again, so as to stop my knee and hip joints taking all of the impact when walking. It was obvious when she explained, but you cannot actually strengthen your KNEES! It is definitely working; so much so that last week she said I don’t need a follow up, and am just to get re-referred by GP or contact her if I am struggling! She is pretty chuffed (as am I!) with how quickly I am getting back to walking around normally, but was warning me against getting overly excited. Problem is, what for most people isn’t classed as exciting exercise, or particularly strenuous, is pretty tough on your body when you barely moved for over six months 😉 Although not to the level some people have to, I did literally have to learn how to walk normally again, as over a year of limping and walking with my foot squinted up to avoid toe-floor contact is hard to undo overnight. It also had a knock on effect up my right side, where I was using a stick for so long, which is why as soon as I was stable enough not to fall over I stopped using it!

Final mention must go to the pub. Or The Return of Kath in the Pub… I have ventured into such establishments a handful of times now since my release/Death Toe chop. We have an awful lot of them in my town, so it would actually have been quite hard to avoid them. It has also meant I can indulge in some live music, one of my all time fave things to have happen in my vicinity. Good sides to all of this? People time is ace. Music is generally ace – I am forewarned and can thus pick what I encounter. Catching up with bar staff who I haven’t seen for MONTHS is heartwarming and has even been a bit tearful in some instances. I feel a tad concerned they missed me for the wrong reasons! I am not drinking any alcohol for the foreseeable future due to the warfarin and general state of my system; partly I want to be able to confidently blame any dodgy liver function tests on the disease, rather than any intake of booze! I never drank frequently to excessive levels, but did used to like a few rums or gins… Equally though, I can happily be in a pub or around other drunk people without having anything, which leads neatly to: Complaints! On the most recent of my ventures into local nightlife, all I drank was a cuppa and a bit of lemonade – at most a pint’s worth over several hours – and I was struck with the WORST insomnia. 5am. Not cool. Lemonade is thus the enemy from now on. Coke was already on the banned list, due to me suspecting it has made me acutely awake on previous occasions. Tonic and lime or soda and lime from now on… Or soda and blackcurrant…

Now Sir Terry Pratchett and I are going to bed 😉

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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