Kath is confused about her mental state, has just had a whole load more drugs, and is trying hard to deal with using the Oxford comma :/

Having an unusually chipper few days – first time in a long while I have both thought about updating blog and then followed it up with settling down with laptop. A little bit of this I am attributing to the cheesiest radio station ever – Tom found it whilst doing the first layer of painting at my new house!! Mega 90’s/early 00’s tunes!! Smidge cheesetastic… It is the kind of stuff I was dancing my arse off to when at Uni/writing essays/would lose my mind if someone snuck into a dj set 😀 I should probably be ashamed, but I’m not.

A few weeks ago, I was prepping (as much as one can!) for the formal meeting decision; the outcome was a warning on my file and five days to appeal it. I was imminently due to go back up home for Mum’s birthday… I got the train home for her birthday, which was technically successful, but only really with Fave giving me a lift to the station and a very nice gap between trains at Lancaster, enabling a few metre stagger into waiting room and the next train arriving in the same place over 45 mins later. The looming appeal overshadowed it a lot and made me have weird anxiety dreams. My current repeating one has been creepy old men with long white beards looming at the bottom of my bed and making me wake up screaming (at least in my head :/ Not sure if I am actually screaming out loud…) and with my heart going like the clappers. This means I then stay awake for ages wondering if my body is waking me up through the medium of dreams because I am a) having a heart attack b) have a clot flying around somewhere c) kicked an ischaemic digit off the wall (THIS one has happened before!). Anyhoo, last time I was at home, I was putting together points for an appeal and fretting about it a lot whilst procrastinating massively and stewing about the deadline for handing it back in… Mum ended up making me stash my laptop away and CHILL OUT, as I was probably doing her nut in 😉

I have now come full cycle and am BACK in Scotland for a few days post-hospital (standard craic). Both times the cat was obviously delighted to see me. That should go without saying… First time first though. I had a few days of just myself and parents, then picked up Little Broo and his lady. It is those two who are running soon in the Edinburgh Marathon for Vasculitis UK. DRESSED AS UNICORNS!!! DONATE FOR KATH POINTS! Seeing them was awesome, even if they did have a little bit too much joy in their faces at the thought of a ten mile run in the rain, up a hill.

JustGiving link for Toetally Awesome!

Fester was being a bit of a git, so the day after getting home I ended up getting some email advice from my consultant and GP, and getting a course of antibiotics from local Scotland GP.

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Local GP has an AWESOME sunny waiting room!!

This ended up being x3/day for 13 days, because typically it didn’t clear up within a reasonable period. That would have been so surprising and unusual that I wouldn’t have believed it anyway, so 13 days was always going to be the case! The nice news is Fester is currently not oozing and I have so far got away with having an active local infection WITHOUT BEING HOSPITALISED!!! *high five, high five, high five* – I have had nervous moments galore since then and have now got a ten day stash of co-amoxiclav (same one) to start if he kicks off again. Voldetoe also being a dweeb. Constantly sore and ischaemic now for over 15 months but never really yet gone properly mental. Freaked out the other morning as he was being rather sore and noticed large black spot on the end in the shower. Black on my toes means necrosis, which means heart sinking and life flashing before my eyes and assuming the rest of my life in hospital;8 I essentially managed to talk myself into a complete state within the duration of one shower… My will was getting amendments made, I was working out how to self-amputate if my Doctors refused… Get out of the shower and line up all of the antiseptic wash, gauze for cleaning, medi-grade manuka honey… Turns out it was some black fluff that had resisted the shower 😀 It was both funny and a bit alarming to see how quickly I lost the plot over a bit of fluff :/ My toes are getting a ridiculous level of attention anyway. Checked at least once a week by practice nurse at local GP and twice a day I am checking them, cleaning and smothering in manuka. It is quite weird putting honey on your own toes all the time. It smells bloody good, but by the time I manage to get downstairs, I keep forgetting to have honey for breakfast. Ooo and Kevin remains fine and dandy – a lot of sensation in the end of the stumpy bit, actually more than the ends of my other toes given how much damage they have accumulated!! Maybe all round amputations is the way to go and just have ten stumpy bits!!

This radio station is awesome… Its the kind of music that I get excited at every single song and everyone else winces at and makes cut-throat gestures to whoever is in charge of the tunes. I miss music so much!! Its like that weird feeling where you feel alone even when you are with other people; I feel like I don’t have music in my life at the moment, even though it has always remained to hand. I think a massive part of that is not being able to dance, even just that casual dancing round the kitchen that was always a standard part of my day! I got out of the habit of having radio etc. on when in hospital for so long and when my old laptop died I lost a LOT of music that I had accumulated over many years. Only just now rebuilding my youtube faves lists and being awake long enough to bother turning anything on. Also finding I am ever so slowly getting over the sulking from missing SO MANY parties and events over the last seven or so months. Even just going out and getting some live music used to be a very regular thing for me and got steadily more and more impossible as the literally five minute walk to my fave pubs became an insurmountable obstacle!

Anyway… For Momma’s birthday, some Aunts/Uncles/baby cousin etc. all gathered for extended partying and food – and! Exceedingly Tall Broo came home 😀 😀 Little Broo went for some carrots or something and came back in with a really tall, really smelly and very tanned older younger brother! The little gits had been planning it for MONTHS to coordinate him coming back from the US as a surprise. He had even gone to the extent of ‘going off grid’ in case Mum used the whatsapp locator function to make sure we didn’t realise he wasn’t in Washington State but actually nearing New York for a plane home! He had a helluva faff sorting planes and trains back but arrived eventually and some of us maybe cried a teensy weensy bit… He has since come down to my house with Dad and spent a few days painting my NEW house – freshly plastered almost everywhere, so needs a LOT of layers of boring white base coat. He is doing well so far, earning his packed lunch each day but wanted talking to… :/

Mum’s actual birthday was pretty awesome! She had a pretty good idea she was getting a party by that point, as Dad had wanted to do it as a surprise, but I made him confess as anything else would have resulted in a divorce due to the unready state of the house for many houseguests and many many visitors on the Saturday night. A huge amount of food was made and brought and it was all AMAZING – I did that thing where you eat so much you go into a coma, which tied in nicely with the energy floop. I had to fall asleep flat on my face a few times over the few days; talking to people and being constantly excited and enthusiastic is draining! It was also quite emotional as well, with Big Little Broo being home, baby cousin being utterly edible and some very thoughtful and lovely words from my parents’ friends regarding how ill I have been. It was something I had been dreading a little, knowing everyone would know to a certain extent and that they would be happy and curious to see me semi-recovered and have questions… and knowing how knackering I find talking and sustained ‘human-ing’ right now. But it was actually just very nice – no one said anything that made me think they were being ignorant or thoughtless, several of them were talking about having read this blog and had lovely supportive things to say about particular things I had experienced, or shared stories of them being in hospital or having chemo etc. It made me very proud of my parents in a roundabout way for being the kind of people who attract such lovely friends 😛  🙂  SMUG KATH!!! Also went to see Beauty and the Beast whilst up in Scotland – didn’t fall asleep, cried a lot and got all dreamy at the size of his bookcase!

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Once on the floor, easier to stay on floor. Knees NOT happy right now!!

One of the nice things about being back out of hospital and on slightly fewer drugs is being able to read again without the words going all swimmy in front of me. Being awake for longer than half an hour helps, as I can get a good uninterrupted stretch to get properly sucked into a story. I missed it so much – it has always been a huge part of my life, being so deep in a book that I don’t hear people talking to me and getting violently angry if someone (usually a brother) even thinks about touching my book… Probably because they used to chew them, or deliberately lose my place to enrage me. Gits. My newest fave author (also Fave’s!) is Laini Taylor, creator of the magnificent Daughter of Smoke & Bone Trilogy. Reading Dreamdark at present and it is absolutely beautiful. Teeming with sentences with real depth and a … I don’t know how to describe other than a tasty texture… When I am reading, the way the words sound in my mind has a flavour and tangible quality to them that books of a less fantastic quality just don’t manage! I knew it was amazing from the very first page; I like to think I can tell from one page whether or not someone has that particular trick I love. E.g. First line on a random page – “Daylight twinkled into twilight as the last slanting rays of sunset withdrew from the treetops.” MMMMMFFF! The downside to reading again is that for some reason it tends to give my depressive side a nudge. Or maybe I read more because I feel a bit more gloomy? Maybe introspective is a better word; I don’t know. I had a bit of a spell of worrying about all the work meetings and getting pissed off that even though I am out of hospital, I still can’t do anything like as much as I want to physically – even when I would have thought I have already massively lowered my expectations 😦 Some days I am shattered by the time I have had breakfast, which is a bit ridiculous… I keep getting cheesed off as well at still feeling stiff and achy all the time. I think I am focusing on that more without dying toes being the dominating pain, but less morphine maybe also not helpful 😀 Sadly staying on stupid levels of morphine not an option, as not only does it make my brain mushy and isn’t safe to be on longer term, but it also will be masking all sorts at that level, and I need to know when things are kicking off to identify what this stupid twatty disease is up to.

I got a lift back down after the birthday weekend and got my appeal letter submitted, then got an invite for a meeting to discuss/present my case. Thankfully my brill Union rep was free to come with me to this one, as it is horribly stressy anyway, but knowing my tendency to run out of brain mid-sentence, the thought of a formal meeting solo has become pretty nasty. Meeting is over anyway and now just waiting for a result of some sort, once it has all been looked over. The weather has turned much more spring-like – and I have now had actual proper sunshine AND ice cream!! I had a crazy good day one day (maybe took too much pred or morphine??) and went for a wander at two and a half year old/very pregnant Aunt pace through the Priory woods. Was very very bad the next few days, but it was kinda worth it to get some fresh air, and to see genuine flowers and all the wild garlic down there. I have been a bit grumpy about the boom/bust cycle – with all the treatment and new things happening drug/pain wise, I have no idea how something will impact me at the moment a few days ahead. I am trying to be careful but also wanting to take advantage of the good days.

I did this one day and went to the big Tesco for the first time since September, but it was a bad idea. I took my disabled parking badge and used it, anticipating that even having a good day, I would be knackered after a shop. Not something I have done very often at all, for the simple reason that it arrived once I was already in hospital and since then I have barely ventured outside/been able to drive. Driving is a pretty new thing for me again! I parked just round the corner from the door, got out and was making my way in and a old man sitting in the passenger seat of a car in a different disabled space started shaking his head at me, glaring and waving his finger and pointing at my car and then me. My first reaction on catching sight of him had been to smile at making random eye contact, because I am that rather creepy person 😉 Then when I realised what he was on about, I firstly decided I was imagining it, then thought I would shrug it off and pantomime asked him “CAN I HELP YOU WITH SOMETHING?” He glared away and down when he realised I was staring back at him and had stopped… Not sure if I really looked threatening, but that was essentially how he reacted 😀 Anyway. I got into Tesco aaaaaand promptly burst into tears. Howled my way around the entire upstairs level. Whole point had been to get a printer to finally sort out all of my doc notes and emails, but ended up taking a lot longer… I called Fave and was crying so hard she couldn’t really work out what the problem was, but I was also kinda laughing at myself at the same time, as I knew I was being a little bit dramatic. It reminded me of the scene in Anchorman when Baxter has been punted off the bridge, and Ron is on the phone… In his “glass case of emotion” 😀

Classic scene! I was basically saying the words “mean man” and snotting a lot. This obviously made for a massive emotional wallop and by the time I got out of Tesco (lovely lady helped get the stupid printer to the car), I was a complete mess. I then cleverly didn’t go home and rest straight away, OH NO. I went and stress-bought (as opposed to stress-eating) more fish :/ I have very weird stress reactions. This is maybe the third time I have reacted to stress by buying fish or plants for my aquarium. Yes, I am a bit unhinged. But aye. It was horrible knowing that I was letting someone get to me so much about it; I think I have a level of underlying ‘guilt’ or a fear of being a fraud still. That is despite many many people reassuring me about this many times. The most hateful thing about it was the fact that I hardly ever use the bloody thing, even when other people are driving and before I dared drive myself again, particularly because I am always worried about whether or not I am in some way ‘taking the piss’ or ‘faking it’!!! The last thing I needed was some mouldy old bastard making me feel shit about it. It is hard enough as it is feeling crappy all the time, constantly trying to walk as normally as possible so you a) don’t look weird and b) don’t do even more damage to your joints/muscles. Oh yes, was not using a stick as PHYSIO HAD TOLD ME NOT TO IF I COULD AVOID IT. No stick, under the age of 80 and not in a wheelchair… So clearly not disabled yep? Crusty git. I have since had to deliberately make myself suck it up and do a cost-risk analysis based SOLELY on how I am feeling/distance involved etc. each time I have left the house/needed to park.

Other fun moments of anxiety/depression surfacing lately have included isolating myself in the house for a few days, as I was too scared to take the first one of my new daily MMF aka mycophenolate pills (I think of them as ‘chemo-lite’ when compared to the cyclophosphamide…). Reasoning for that being I didn’t know what the side-effects would be :/ Even though the most likely one was puking or stomach cramps, I essentially convinced myself that the world was going to end and stayed in sulking and avoiding making eye contact with the box. Ahhh the joys.

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Evil box…

I am a few weeks down now and nothing particularly exciting has happened. The only stomach cramping was nature being a git. Oh yes. TWICE IN ONE FRIGGIN MONTH. Nearly. I ate an entire bag of mini eggs for breakfast one day. That was a significant clue. Recently had my first physio app and the woman was really lovely; really good grasp on what it has all meant for me, regardless of the unknowns for me re specific diagnosis. I did a little walk up and down for her and she agreed that my foot muscles have gone a bit strange from trying to keep my toes up (sub-conciously) so I don’t touch them off the floor… Also that yes, using a stick is helpful when I am very bad on one side or having an unpredictable shhhlumpy day or super tired… But longer term, thinking about muscle wastage and damage from being lopsided etc., handier to not use it where possible, even if that means I am a bit slower. More important to try and walk ‘normally’ again, although she did confirm that most of what I was instinctively doing when I was learning to walk again post-amputation was exactly what she would have been advising. I already do a lot of foot flexing etc., but the thing I hadn’t appreciated was that when my knees are being horrific, you can’t strengthen a joint… You need to basically make the muscles in upper leg stronger to support the movement of the knee. That is maybe not technical jargon, but yep, even if I am having a naff day, I need to try and do even very basic movements each day, preferably several times a day. They aren’t exercises as such, more like making specific muscles work, which thankfully I have found I can do without putting much strain at all on my back or knees. The worst bit is actually getting up again when I have been lying down haha 😀 It is seriously hard; involves a kind of three point, three directional manoeuvre with swearing and hauling on end of the bed/sofa/chair etc. Really not my most elegant moments!!

Still got many, many doc appointments each week. Earlier this week I had some nice news re blood results (bone chem profile, full blood count, LFT’s, long term sugar check, cholesterol etc. – everything!!!); nothing new to be alarmed about and my LFTs are currently only approx. 1.5 – 2x normal adult range ‘max value’ instead of the 3 – 4x that they were in Dec when they peaked! As a comparison, since early last year when I started to get worse, those results started to climb from usually being at the low end of the normal range to the December high when I was exceedingly not well 😏 They have fallen very slowly but consistently downwards since then, getting checked every couple of weeks. As a reminder for those who maybe doesn’t already know, blood tests are definitely not a reliable marker for everyone – and I personally don’t tend to have very reliable results in terms of reacting when I am very flared or infected – or showing ANCA or raised CRP or any of the other NORMAL bloody indicators of the disease I have!!! – but I spent a long time being told that my blood tests showed NO signs of me being ill, only to find that that was absolute garbage. To have a visual marker of something improving month by month is so nice amidst all the crap. For this to be happening despite dropping pred slowly since I left hospital is very nice as shows that it is genuine improvement; maybe a tentative sign that the rituximab and the cyclophosphamide are doing something??

The other nice medically type news is that my hip biopsy site is now healing slowly (month and a half on!) with no sign of infection at present!! This is likely to be vastly sped up by the recent removal of four so-called DISSOLVABLE STITCHES… For whatever reason, my body just does NOT dissolve them. Doc thinks it is one of those interesting quirks that make me a medical weirdo/maybe something to do with my immune cell reactions to foreign objects being compromised… Same thing happened with the Hickman’s Line stitches – I ended up pulling them out myself, when the wound had basically healed around them. Left with a flippin HUGE scar 😦 The problem with biopsy site was neither myself nor practice nurse (until the other day at least) had realised there WERE any dissolvable stitches involved!! Given the 10m (approx.) of normal stitching removed over a month ago, having anything else involved smacks of overkill. So yep. Drugs slowly reducing a little/balanced by the new MMF… Doing the upcoming fortnight looks like this + paracetamol + warfarin 😛 Still takes over an hour, but economies of scale in having purchased second weeks worth of boxes!

Have just come full circle; back in Scotland having just had my third ritux infusion – featuring overnight stay – in Carlisle hospital, and heading back down tomorrow. It was very nice to see staff I know and like again, and I didn’t have any interesting allergic reactions. Yet. I have at least a month’s worth chlorophenamine on standby in case I get that fecking itchy rash all over my arms/face/back/chest again. Watch this space… 😛

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#rarediseaseday challenge – Day 28: RARE DISEASE DAY!

#rarediseaseday challenge – Day 28: RARE DISEASE DAY!

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

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

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

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

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

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

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

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

justgiving – Connor & Co. running for Vasculitis UK

Toe Death do us part! (Credit to Dad for the title… He started badgering me to get that one used over five months ago! Not so optimistic were you Dad ehh?!) *****NOT AS MANKY AS DEATH TOE BUT PIC OF DEATH SPACE? DEATH GAP? GHOST OF DEATH TOE??????******

Ok, so as you may be able to tell from my title, I don’t really know what to call the new void in my life 😀

******Personally, I don’t find this as difficult to look at as the infected and necrotic Death Toe we have all come to hate and loathe, but fair warning, I have wanged in a picture of the fairly fresh amputation wound a bit further down! It is all clean and tidy, but may make some of you feel a bit icked!!******

I would firstly like to tip my hat to the surgeons at Cumberland Infirmary, who stepped up and lopped off the toe that quite a few Docs had previously shied away from amputating… That being due to the seriously poor circulation in said toe and the rather frequent infections I end up with :/ It basically got to the point where it was looking pretty likely I had osteomyelitis and when the amount of pain I had been in for a YEAR was factored in, everyone agreed to just get rid of the little git!

I had literally JUST had five days of plasma exchange followed by the first dose of cyclophosphamide and was then advised it was chop day… Which meant no painkillers :/ It was a mixed blessing that Mum managed to see me before the operation – obviously lovely to see her! – but I had not had any painkillers that morning and was NOT a happy bunny. Death Toe was being a proper little git and I was curled up in a ball whimpering when she came in and had to sort my self out to have a chat with her! She did get to see the fab arrow moment below though 😀

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I was feeling pretty grim that morning anyway, so the actual pre-surgery prep/chat is a bit of a blur. I do remember getting the hideous – I mean FETCHING – hospital gown on, being wheeled down on my bed and being in a sort of pre-surgery waiting area… I mentioned how bad my circulation got when I was cold (getting a bit jittery about turning blue on the table!!) and was given a fabulous heated blanket which felt divine! Then I was wheeled in, and had an mask over my nose and mouth and was breathing in slowly whilst something was injected into the cannula already in my wrist… and then next moment I was waking up rather slowly and fuzzily in the recovery room! I had some totally crazy dreams that I cannot sort out if they came before, during or after… Very vivid and lucid, with incredibly detailed plots that felt like they went on for days!!  General anaesthetic from that point is pretty flippin neat!! But I really felt pretty shocking for at least 48 hours afterwards…

By that I mean when I came round, I remember seeing one of the ward nurses I knew and trying to smile at her, hearing something about my temp being 35 degrees again and realising I was absolutely frozen!! Then someone said something about heated blankets, one got laid over me and I must have grinned through the O2 mask, as she (the nurse) said “That’s cheered you up, hasn’t it!” and I dozed back off! Then I was zoning back in to being up on the ward again and realised quite how shocking my breathing was and feeling horribly feverish for what felt like a long time. I was very, very breathless, it was horrible. Reminded me of when I had pneumonia many years ago and I was getting tired just sitting up. I thankfully didn’t feel massively sick at all, but was asleep the vast majority of 48 hours, had no appetite at all and was utterly exhausted talking for more than a few seconds. Getting the five metres to the toilet (I was DETERMINED not to use a commode!!) was enough to absolutely wipe me out and someone was walking with me – NOT because of the amputation!! – but because I was so tired and dizzy I felt like I was going to fall over!

My first look at the toe was to take a bandaged pic and text parents to say all was ok before I zonked out again. I wasn’t sure how much of it was whatever local painkiller they popped in me before I came round at first, but was walking on it (with stick) pretty much straight away to the toilet and INSTANTLY was telling everyone it was less painful than before!

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Brace yourselves, next pic is a space where there was once a Death Toe…

Now obviously at first, everyone was probably assuming I was just quite doped up and I was offered oramorph if I wanted it, which before chop I had been using a fair wee bit as a regular top-up to be able to handle Death Toe. I quite quickly convinced everyone – including the surgical team! – that I wasn’t being a tough cookie however and it was actually massively less painful 😀  I will say with absolute sincerity that getting that sodding toe amputated is one of the best things that has happened to me in the last two years. For a year at least, Death Toe was ulcered, infected almost continually, then turned necrotic and was the acute cause of three hospitalisations totalling at least eleven weeks to date in the last six months! This may seem a bit weird, but I was actually laughing with the surgeons when they first unwrapped it and I had a look, as the gap was a lot bigger than I expected – and the lead surgeon said I had a fat toe 😀 I assume they don’t normally get thanked quite so sincerely for having chopped off someones toe 😀

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My first impression was how huge the space was for one toe… Second was that it is going to permanently look like my foot is telling the world to rock on haha 😀 Other wonderful comments have included the following: “It is a serious bit of space you’ve got – make a tiny model of a guy tightrope walking across it!” (hehe) Little Broo’s tattoo suggestion for my foot: “mind the gap” (probably too serious an infection risk haha!) Other tattoo suggestions included “It was not meant toe be” and “Digitally Remastered” 😀 I think absolute fave reaction has been Em, when I sent her the above pic on whatsapp and she eloquently replied with “Fucking hell! It’s like a scene off the walking dead…..RIP death toe” 😀 I love that lass!!

A huge amount of love and support as always from the Vasculitis UK facebook group… A lot of them have been following this blog, which was started AFTER Death Toe became a git (hence the name… Obviously…), but actually before it went necrotic. They were all being fabulously happy for me, which in itself is a massive boost when you are feeling naff. I also got to meet one of the gentlemen I have talked to for a long time in person, just before surgery and then afterwards for a groggy hello again! One of the loveliest things was the below pic being sent to me! One of the ladies and her students had a fabulous toemorial supper for “Nekro dakteelo” (Greek for Death Toe) as, as she explained, in Greece both life and death are celebrated with food 😀 Fabulous idea!! She had been reading this blog with them in their breaks, so from me to them, a massive hello and lots of love and thanks for the support xxx

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Anyway! I got a new neighbour on the ward yesterday… Annoying on many levels. The following is a bit personal and obviously, this lady is VERY unwell and the fact it irritated me so much is probably due to me feeling a bit sensitive about the topic rather than her being deserving of it. Also quite likely a level of me being sensitive to both her accent and lack of enunciation (eeesssshhh) and what I cannot help but assume is a consistently present level of stupidity. Haha ok, I am totally failing to be nice about her >.< Please please believe I am very sympathetic to be being unwell and have not been mean to her, but yes. She has been driving me insane since the second she was wheeled in! Firstly, I couldn’t help overhearing that she is a diabetic, who hasn’t checked her blood sugar levels or taken insulin for WEEKS/doesn’t eat anything sensible (the list of things she doesn’t like was insane and the only thing she could offer that she DID like was chicken…) because… She didn’t feel unwell. Until she collapsed and surprise, surprise her kidneys have failed. Her doctors are a thinly veiled appalled and I would go so far as to suggest angry; apparently she is consistently shit at monitoring and been warned many, many times. For someone who is personally desperate to avoid kidney damage, given that my disease seems to be going for my smallest blood vessels, I couldn’t help but find that kinda upsetting, seeing just how upset and frustrated her husband and doctors were. Each to their own?! Can I be angry at this justifiably, or is that a bit ethically dodgy?? On a more immediately understandable level, her space is also making two types of beeping… Fair enough this was initially first being noticed seriously at 11pm but last night it went on for over three hours (I finally managed to sleep) and appeared to be necessary as no one did  anything to make it shut up!! We had high pitched and constant: bip bip bip bip bip… and then the more musical, annoyingly spaced every seven seconds: bi-di-bip!! – and tv on (quietly but… cammaaaan lass!) – and light on, curtain wouldn’t fully close between us!!! Tonight – correction ALL DAY – we have had the tv on as well… I don’t watch it ever myself (unless on the sofa with Fave and Giant Beast) and I have decided to now hate her with all my tiny rage 😑 Been a while since I had an in-patient nemesis 😄 It feels good, gives me reason to keep fighting hahaha – I’M JOKING CALM DOWN – but seriously, if she falls asleep with that tv on again tonight I will smother her. It isn’t all grim. The 90 year old lady next to me is absolutely wonderful and spent the morning bantering again with the student nurses, making me laugh a huge amount and generally being fabulous all the time 🙂  Ooo the below were a little pressie I was sent from one of the support group as well 😀 Perfect for slipping in my mittens and reuseable 😀 (Thanks again xxxx)

 

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Today was a good day all round… I had a good chat with a few docs and my consultant and have been given the go ahead to drop to 10mg pred daily, start lowering the slow release morphine I have been on for at least five months and managed a good few short walks to the nurse desk and back 😀 With my stick still, but was aiming to get my foot flat on the floor through all the padded bandaging… First time in about a year, as I have been walking with my toes up to avoid the pain of contact, as the initial ulcer was on the bottom of the toe. I did manage, but had serious muscle twinges all the way up my leg, hip and back after a very short distance, so defo need to get some physio involvement and build it up slowly :/  The actual foot itself was way less sore than the resultant twangs!! ANYWAY. Also started warfarin again FINALLY and based on me being steady for the next few days on it (ie no unplanned incidents hehe) Docs are happy enough for me to maybe go home for few days to parents’ house 😀 Would then be back here for dose two of cyclophosphamide and a review with vascular, surgical and renal staff again… But I might get to see the sky :O

Finally!! My fabulous Little Broo and his equally fabulous friends are being very good eggs and doing some fundraising for Vasculitis UK. I have been doing the happy cry thing all day and getting some beautiful messages as a result of him sharing his justgiving page and cannot thank him and the team enough 🙂 Please have a click, a read and a share and go and visit the homepage for the charity. Any pennies you can spare would be appreciated and I cannot stress enough how much myself and the other members in the support group love and value the help and support we receive, on a daily basis in many cases!

Toetally Awesome – JustGiving page

 

In which Kath and a very infected Death Toe & Fester are transferred to another hospital… Lots of poking and treatment commences! [Wed night to Monday night of the Second Incarceration 2017: Part 2!!] *****Horrible pictures, not safe for viewing by anyone*****

So… The Wed night saw my new consultant step in and arrange a transfer by patient transport ambulance. He offered to get me up to his hospital and I basically bit his hand off, as it nicely got me away from everything I was no longer very chuffed with. He was talking even in preliminary discussions about more aggressive treatment (not hard…. ooo I’m feeling bitchy apparently!!) and investigation, which at the point I was/am at is much preferable to fannying around and sacrificing more toes etc. on that altar… The lovely ambulance crew got me strapped onto a stretcher and then wrapped me up into some kind of Kath-bug, very snugly indeed. I dozed quite a lot on the journey and then got wheeled right up to a bed in a little shared room quite late at night. I got started on quite a hefty dose of a different, stronger iv antibiotic, which continues three times a day at least throughout this post… A lovely member of the ward night team got me settled in and I conked out pretty easily, having been absolutely shattered for days on end by that point.

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######Before I go any further, major viewing warning for further below; exposed flesh-of-Kath, bloody plex lines and infected digits!! You know you like it 😉  ########

Thursday I had a very busy morning, getting a femoral line put in… I already shared a pic of this on my Facebook page, but it is glorious enough to share again 😉 See below! I had some bloods taken out at that point and flasked for another cryoglobulin test… My Dr is still thinking it could possibly be cryo! It always fit in terms of symptoms and progression and a cryoglobulin test done earlier this month showed a weak postive – in that there was cryoprecipitates in the sample, but too little to identify what kind/test the sample properly. So there was a hefty blood sample taken out of the line just before it was capped… Result not yet in…

I then got wheeled down on my bed – through the WHOLE HOSPITAL 😀 – very dramatic!! – to the renal dialysis unit, where I got hooked up for day 1/5 of plasma exchange again – see resultant carnage above! I previously had this in December at Addenbrookes and the thought behind it is that my immune system is attacking something in my blood plasma (if it is cryo that I have, then it is attacking the cryoglobulins!) so plasma exchange not only gets rid of the antibodies attacking the bad guys but also stops my blood being all sludgey (which would be explained if it is cryo, by it being full of cryo blobs as they are big bastards when they fall out of solution (when I get colder)!). The lassies on the dialysis unit are lovely and got me settled in quite nicely; I was still so tired, I was completely out of it and asleep for most of of the time. Not sure how long… Maybe five hours? They removed about three litres of dodgy plasma! One cool thing I just learned (Monday night…) is that my tingly lip thing I get with the citra-lock they use to seal the lines between use is a known but quite unsual reaction – so that explains when they said I am “very symptomatic”!! I had told them as you are asked to mention anything weird and it was pretty bloody obvious – and has happened each time! – but didn’t realise it was so unusual!

Thursday eve I also got a visit from the parentals; they were doing a cross-over and meeting at the hospital, Dad coming up from down south and Mum down from Scotland – pretty good organising, but slightly dysfunctional 😀 😀 It was a bit of an emotional one. I had a chat with my new consultant whilst getting plasma exchange (hereafter plex!) and basically, the rituximab I had two infusions of in December isn’t an aggressive enough drug/hasn’t acted quickly enough really to be safe leaving by itself.

[Bit of a recap…] My disease (whatever it is) progessed too far without being checked before I started any treatment in the first place (my opinion, based on symptoms and time for recognition etc.) and then there was a serious load of faffing around when I was in hospital before Christmas. It is this bit that I am attempting to let go (both my own side of it and the part anyone else played), as they couldn’t give me the rituximab at that hospital – no funding for it, based on my diagnosis at that time. I COULD have said yes to cyclophosphamide at that time, but I was desperate to avoid it if possible, so I dug my heels in, made myself a pain in the arse and after weeks of sitting in agony watching my toe die, in a sobbing morphine mess, I got referred to Addenbroookes. Once there I got plasma exchange and they also sorted out rituximab for me, it being my preferred treatment and appropriate given the symptoms and my age/gender. So…. My toes kicking off twice so far this month is not necessarily to blame on the rituximab not working, but does mean that whatever benefit it is doing is not strong enough at the moment to be holding back the vasculitis/sludge blood.

Right!

######### Manky toe pics below!!! Scroll down fast to avoid 😉 ###########

The below is really pretty bad, both in terms of how fast it came on, it being a recurrent scenario and it being a horrible scepticemia risk as being immunocompromised on a few fronts, I basically have to go in asap and get iv antibiotics stat. This in itself can be quite hard to argue for, as I don’t present infection normally and was actually really quite bad before I realised as I don’t get a temperature, am used to them hurting a stupid amount anyway and was also just thinking my joints etc. hurt because the rituximab wasn’t working yet… Take note (if you can bear to look) at how the bit below the demarcation line is inflamed and infected now 😦 This is not good news and the vascular team came to see me and mri was sorted to look for osteomyelitis to see if it was choppy choppy time!

I’d say I am sorry for the above, but I’m not, I actually like making you all feel icked out 😉

So yep. Parents came and managed to converge and were here at the same time… With the ritux seen to be not working quickly enough, my Dr talked to my Drs at Addenbrookes and the consensus was that I really had to go for the cyclophosphamide now, or very seriously risk regretting not doing so.  This got lined up for today (Monday) and I am at this moment watching the nasty toxic stuff dripping into me, hopefully making a beeline for my immune system to do what it is supposed to do and bypassing my ovaries and my hair etc. etc. and all the other things chemo kills.

I think its all well and good me preaching education of the masses – particularly with respect to the emotional impact of these kinds of treatments – but I need to be prepared to practice what I preach 😉  The ovaries are the main one thats getting to me and the reason for the parent visit being a bit emotional.  They know only too well how long I fought to avoid cyclophosphamide in October and November – hell for the vast majority of six weeks! – and to now have no other options left is rather depressing to put it mildly. Before anyone pops up and suggests it, I can’t get eggs harvested as I am way too ill for the time that takes and having polycystic ovaries, the drugs required to get eggs ready to harvest would essentially put me at exciting risk of lots of cysts rupturing left, right and centre! If you google cyclophosphamide you will find it is not really first drug of choice for women my age for this reason. So I had a very quick cry with Mum and then we both told each other to get a grip, because as we decided previously, it isn’t very productive getting a cry on and then having to say bye – which we did, only about ten mins later, as one of the ward patients was having a serious anxiety attack at how many people were in the room and visitors were asked to adhere to the visiting times. So a good thing we didn’t get each other hyped into a drama 😉 I guess I will process it at some point! Just probably not whilst still in hospital.

Anyway. Something a bit different… 28th February is Rare Disease Day. This year to raise awareness, there is a photo challenge with the #rarediseaseday on instagram and twitter…

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A handful of us are taking part (on an as and when/can basis!) on the Vasculitis UK Facebook support group and the results have been both amusing and quite poignant. Me being me (and currently in hospital once again) I have been looking for entertainment in the one hour out of every 24 that I am both awake and fully concious 😛 It has so far proven quite amusing reading everyone else’s little snippits and insights into their day, but there have also been some brutally honest posts, where I get the feeling a few people are sharing things with their friends/family via their own pages that they normally don’t feel they can.

Friday, I was still absolutely buggered and started to be a bit upset again about the cyclophosphamide. I talked myself down a bit by shelving it for now and will revisit it later when I can handle it. Same has I have done with the toe 😀 I already even have a joke – ovaries are ovarated 😀 Cammaaaan… Thats pretty funny 😉  I’m basically looking at it along the lines of all of these Docs wouldn’t be saying it is now time, if it wasn’t time. It happens to other people all the time; statistically there was always a chance of it being me and it would be rather big headed to think it wasn’t ever going to be me! Other exciting (?) thing on Friday was the mri of the foot… Death Toe and Fester were being little shits still so it was NOT fun AT ALL – normally I absolutely love a good mri, consider myself something of an expert 😉 But when I have infected toes, it hurts a LOT. All the vibrating and moving around… The whole point is keeping as still as possible and I kept getting involuntary nerve twitches that made keeping still pretty impossible. That has been going on the last few days, noticed it a lot in plex today as it was waking me up every time I dozed off! After the mri I basically conked out and didn’t really properly wake up at all until Sunday haha – Saturday I didn’t do much except sleep. I had more plex and had an exciting moment that the nurses called a “waffy moment” which amused me, as baby cousins always called me “waffren”… But my BP dropped to 88/44 at one point which is quite excitingly low for me! I am normally about 125/88 as a rough average… and that is with a lot of medication bringing that down – sludge blood remember 😉 I was fine afterwards anyway, they think it was because I had food and it pulled all the blood to my stomach haha 😀 Toe dressing also got changed. That was enough for me, I went to sleep and didn’t bother with much else 😀

Sunday I had plex early on – I wacked on the last Harry Potter audiobook and was asleep again in minutes, having been awake maybe for an hour, which included having a slice of toast 😀 I slept for at least half of the treatment and when I woke up, although I looked like the below (eurghhhhhh!!!) I was a lot more awake than then last week or so – remained awake for the rest of the day with only minimal crashes!! Toe wasn’t as sore either as it had settled post dressing change and meant I could have less oramorph, so wasn’t as wacked out. Dad visited as well which was fab 🙂

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Note the stylish antibiotic bag necklace :O All the cool kids are wearing them…

Just had a little look on Patient Access to cancel the next few dressing appointments in advance… My discharge letter from admission through A&E is hilarious… In a sad, not really funny kind of way. It consists of about three lines. Maybe two sentences. Blah blah 28 year old woman blah “admitted with suspected cellulitis of her right foot…” Blah blah “We gave her IV antibiotics to cover for cellulitis, however her CRP is less than 5.” Yes, yes. CRP is the important thing to focus on.

Anyway… I think I just lost a bit of tomato or corned beef down my pj pants… :/

Today (Monday) was last day of plex. I started off with breaky nice and early to try avoid BP crash, but had another waffy moment anyway. No idea why! Managed to be a lot more awake again today. Line is staying in for a few days anyway, but once back up on the ward, had a big bag of saline through it and had the relatively innocuous, quick bag of cyclophosphamide. It comes with many pills and bits and bobs to protect your bladder and kidneys, stop you puking… So far no pukey! Woo! Mri scan was reviewed today and it is not very conclusive, but if there is osteomyelitis it is confined to the already dead bit of Death Toe. I will stay on antibiotics for who knows how long… Will be getting another biopsy to look further at possibilities such as CPAN and cryo (both really rather rare types of small vessel vasculitis) and anything else it could be… and may eventually have a bit more of a firm diagnosis one day. But! The exciting bit… Tomorrow, I am booked in for surgery and…

Death Toe is getting the chop 😀

This is the the last adventure of this particular Death Toe 😉  (I will keep writing, calm down, keep your panties on…) I am sorry to say I am sceptical of being able to say there will be no more adventures of Death Toe(s) but at least from this one, goodbye 😛 and from me (to DT), FUCK YOU, YOU PAINFUL NASTY LITTLE SHIT!!!

 

In which Kath nudges a new low… (or high – depending what blood test you are talking about!) Stressed oot of her tree >.< and we have a facist cheeto as president. Wonderful!

 

If only we DID have a pipe smoking rabbit 😦  …..Or we COULD! If he would accept the job. Bunny?!

Yesterday I hit a new behavioural low; I googled ‘hogwarts grades’ and rewound the Half-Blood Prince to check what Harry got for his O.W.L’s  so that I could judge him accordingly 😀 Yes, I am disappointed in myself. This is another post I am typing over many days in small chunks, [officially at the two week point now!] I basically am sleeping too much and when I am awake have other vital things like eating or toe dressing changes that sadly have to come first 😦

Several days in early January were (as per previous posts) spent in hospital AGAIN – a Sunday night, very late, to the following Thursday afternoon. It had only been a few days since I came back down south from Scotland, before I’d managed to get myself admitted through A&E. It interrupted a planned night seeing my friends for the first time in weeks, with the film already started whilst I was waiting for the call handlers for NHS 111 to call me back. When I had spoken to someone who confirmed that yes, I did need to go to A&E and get admitted urgently and start iv antibiotics, I thanked them for their time automatically, hung up the phone and burst into tears. I had Fave and Inside Friend and a few others (including massive beast dog) with me and was consoled and petted and reminded that I had survived the last incarceration – and that going in then and getting iv antibiotics was vastly superior as a plan to going in a few days later, very ill and being kept in for years/losing a toe. It helped a little. Dad was staying so was able to drive me in and keep me company, until I had passed through the magic A&E assessment ‘admitted’ wall.

So as per the previous post, I had a few days of iv antibiotics – four bags a day, along with some different stomach protector drugs (because of the deplorable liver function tests) and finally some anti-histamines… By the time of the last post, the rash was calming, presumably as I started taking four anti-histamines a day. My skin remains dry and sore and peeling and just generally crap and making me super grumpy 😦 Not a clue anyway. It seems to be calming down… If it is the rituximab as thought, the plan will be to monitor me very closely if I get another dose of it, in case I have a more immediate reaction during infusion.

I had a really nice surprise whilst I was in hospital this time – not a sentence people will utter very often and honestly the last thing I expected to say! My fave med students from last time came round the ward 😀 They were hunting for people to do a practical with and upon seeing me, came over and we had a lovely catch up and then I had a break to go and get a shower and become a bit more human. You don’t really want people doing a physical exam of any sort if you haven’t had a shower for 48 hours! 😀  These were the two (minus one of their buddies) who spent quite a bit of time with me last time and ended up doing one of their presentations on my case before I was discharged – they did very well 😀 I came back all clean and shiny, their supervisor appeared and we did a practical, involving poking my face and arms with cotton wool and teeny tiny little pins to check how sensitive my skin was… Then an exam of my abdomen, prodding on various organs, presumably to check if my liver etc. was rock hard or exploding. It was all quite fun! Seeing them was the high point of my time in there; I was very upset at being incarcerated again, it felt like I had only been out for days. I really really didn’t want to get admitted, but at the same time fought my corner to be admitted, because I knew it was the only way to get the iv antibiotics I needed. It felt so weird being in that position.  The second doctor who saw me and confirmed that this was very necessary was key in making it happen and took the pressure off me feeling like I was demanding it, so after that I went back to being sad about being back in hospital. New Doc has confirmed that I will be able to get some kind of alert on the A&E system to say I have a chronic illness, am immunosuppressed, don’t present normally with infections – e.g. don’t show a temperature 😀 My toe was infected to high hell and because it wasn’t showing in my bloods and my temp was 36.4 (I think!) I was going to be discharged. Stupid temp crap stupidity….

I didn’t see my own consultant when I was discharged; I started off trying to check some details (e.g. clarify what was meant by my CRP and liver function tests reducing, as I still can’t see them online yet) but was met with alarm and bewilderment… Copy in Addenbrookes?? Who is Addenbrookes?? Ehhh… Either means my notes don’t show their involvement at at all or he hadn’t looked at my notes! [At this point in the typing, Kath fell asleep on her desk and made herself decant to the sofa for a proper nap – she had a phone call due in 20 mins with the independent medical advisers who would be putting their recommendations to work and she suspected it would be wise that she didn’t conk out mid-sentence…] [EDIT: May have been better if she HAD conked out mid-sentence… Now I am in a stupid situation where they reckon I am good to go back to work, I am feeling utterly terrible and my doctors are all saying that going back to work is a stupid idea 😦 ]

I spent the next few days feeling considerably better than before hospital admission (hence a rather too optimistic phone interview with medical advisers!!) but my friends all simultaneously managed to get some kind of horrible puking death plague or felt crappy so they were all quarantined (or at least in my case!) and I didn’t see many humans :/ I DID see my amazing baby cousin! My auntie took me to CHOC to get emergency MST as I managed to run out and didn’t fancy going into morphine withdrawal over the weekend! On the way back from the hospital, we detoured to Pets at Home so my baby cousin could see the rabbits and fish – he is two and a bit and is very fond of my own fish (see below spotty guy! Either Mario or Marcus, not sure…) so we thought he would enjoy it 😉 He said “fush! fush! fush!!” an awful lot 😀 Like a cheap version of a day out at the aquarium hehe!!

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Whilst I was feeling better, I did a massive drug sort for the next two weeks – I was discharged with a slightly different brand of my usual slow release morphine, so I got to see the super pretty pink and yellow pills again 😀

So many appointments. So so many. Between formal work things, GP appointments, toe dressing changes and doctor appointments at the hospital, I have had one or two things a day since discharged back in December, excepting the two weeks I was in Scotland, when I had a blissful period of nothing to worry about attending or missing. Being in hospital again at the start of the month was intensely frustrating, as I had to cancel and rearrange various things, with absolutely no idea how long I was going to be in there 😦 One of these was a meeting with Adult Social Care, which I still need to rearrange.  I started counselling again at MIND and THIS had to be rearranged. Currently managed to get myself an hour slot once a week and it seems to have unlocked a load of stuff I was trying not to think about or acknowledge, as I have basically spent the last week crying a lot. Unless that is just being really tired and ill and generally crap?

Fave had a properly wonderful phrase she used today, about feeling like a “non-human” – when everything is snowballing out of control and you can’t handle even basic ‘life-ing’. That basically sums up how I am feeling at the moment 😦 Pretty much all I can handle is waking up, eating, drugs and more sleeping. The appointments are so knackering and toe dressings so painful at the moment. More ulcers are appearing. Yes, more ulcers. More potential shitty infections. The blood tests from last appointment show a wonderful mix of my liver function tests still being crap – so much for them having improved when I was being discharged!! – and my kidneys now being shitty as well. GFR… ACR… Also very anaemic which I am not entirely sure how to fix, but presumably my GP will know tomorrow! Explains the horrific level of fatigue anyway. No signs of infections on the toes, although all these crappy ulcers keep appearing, but I also have raised white count and neutrophils :/ infection or inflammation?! Something… Hmmm.

Details for the ones that are a bit dodgy anyway for anyone who is interested/knows what they are looking at! HbA1c (long term average blood sugar check) was good, so they really need to accept not diabetic by now!! 😀 I am basically on constant infection stand-by now and depending on what everyone else thinks (e.g. Addenbrookes and GP) may well need to go in and get poked at anyway. Liver function tests have been crap since the start of last summer, increasingly so since September. Kidneys – I don’t know.

ACR: 60.3 mg/mmol!! (norm is <2.9) Estimated GFR: 70 mL/min (norm is 90-120) (up from 60 in September)

Good effort Kath kidneys!

ALT: 90 U/L (norm is <40) (up from 77 in Dec)

GGT: 120 U/L (norm is <45) (down from 128 in Dec)

Good effort Kath liver!

Haematocrit sorted itself out by a few percentage points, back down to within the guide limits from December…

White Cell Count: 14.6 10*9/L (norm being 4.0-11.0) (up from 10.3 at the end of September, not long before I was admitted to hospital)

Neutrophils: 13.1 10*9/L (norm being 1.8-7.5) (up from 6.5 in September)

Iron: 6 umol/L (norm is 11-29) Transferrin Saturation: 8% (norm is 15-50)

CRP down though! 5 mg/L (down from 9 in September)

So yep, blood tests are obviously not everything, but iron in particular explains possibly why quite so bloody tired at the moment. Stupid blood tests. Confirmed in writing anyway that work is a stupid plan at the moment until I stabilise. Not least because everyone is basically waiting for me to go into hospital with another exploding toe…

I got myself the below notebooks/memo pads to help me keep track of everything… They amuse me AND fulfil my need to note things down continually and obsessively. This side of things has definitely got worse; I guess it goes hand in hand with how many appointments are coming through! I can’t stop obsessing over missing something or how I am getting to each one. Although wonderfully I have had confirmation I can use the Patient Transport Service. This is sadly essential; the warfarin I need won’t get administered at the local GP surgery as I am too complex, on too many drugs, too likely to be hospitalised etc. and the INR practice nurses don’t think they can monitor me appropriately. This means I need to go to the hospital anti-coagulation clinic every two or three days!!! I can’t drive… It is during the day so everyone else is working… HOW CRAP IS THAT? 😦 Up steps Patient Transport Service and saves the day. I count as pathetic enough to qualify for help 😉 Woo hoo!

 

Newest thing the rituximab – or just generally being ill – has thrown back at me is my hair falling out again… The fact  I have always been so nice and careful with mine for my entire life, using no hair dye, straighteners, not even a haur dryer… Makes it feel like an extra kick in the teeth. We aren’t talking delicate little strands coming out, its loads everytime I wash it or even touch it now 😣

ANYway. This being the most generally shit I have felt in a long time (when you factor in emotionally, as I am a few horrific nerve stabbings away from Death Toe death point…) I thought it was a good time to re-read the below and have a think about the general message. Conserving spoons has become so horribly important. Wake up, need to take drugs, get down stairs – or off sofa… Banana or some yog as the easiest option, hot water to loosen throat and ten painkillers. Then sofa and set an alarm and collapse again. Then wake in a panic thinking missing appointment 😀 Sometimes a shower if it has been a few days… 😉 Toe dressings are twice a week at present. Most unpleasant. Not sure if I am just more tired or if there is some infection going on I have yet to see, but Death Toe is back to the point of making me cry with pain now when the dressing is being changed twice weekly 😦  I knew it was going to change a few times in the falling off process, but didn’t expect it to go back to November levels 😦

The Spoon Theory  This is something I make myself read now and then just to remind myself of that amazing moment when I first encountered a written interpretation of what I was feeling every day – a feeling I was struggling to explain to anyone. At the time it seemed like only Fave understood (dramatic much?!) and she me this as a way of helping me wrap my head around it. About two years ago now :/

Oh jeeeeeez Dumbledore just got killed… Don’t know if I can handle this in the middle of the night!!!

[FYI… Discovered the best thing in the entire universe last week. Homemade (slightly dodgy) scotch pancakes, spread with biscuit spread… (essentially brown sugar that tastes a little bit like a crunchy rich tea). It is very wonderful. I made a batch of the batter and left it in the fridge for making a pancake whenever I needed food. You are welcome in advance. Please apologise on my behalf to your dentist.]

Finally. THIS 😀 Peter Digs A Den Wonderful children’s book by two marvellous Cumbrians, coming soon!! Click and like the page pleeeeease 😀

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***