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

 

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Kath has icy cold hands and is scared to look at Death Toe :/ EDIT: Kath just looked. It isn’t Death Toe this time. Its Fester. AGAIN. FFS!!! FURTHER EDIT: It is BOTH! Kath is incarcerated for the second time in 2017. Kath is pissed off.

 

[warning – written over several days: please turn a blind eye to tense 😉 ]

“In the midst of winter, I found there was, within me, an invincible summer. And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger… something better, pushing right back.” Albert Camus

Featured Pic is an artwork for this post: Mikhail Georgievich Abakumov – ‘Screaming Spring’ Thank you to one of the support group members for drawing my/our attention to the quote and the artwork; it has tied in nicely with me finding the below link AND with someone else in the comment chain for that post describing their disease as follows: ‘today my invincible summer is a mild temperate summer day due to bronchial inflammation 😉 ‘ – I loved this idea 😀  Mine is an unseasonable torrential downpour, as witnessed from within the bowels of a terminally ill goose who ate too many rotten cabbages… Yes, I feel wonderful and chirpy.

Arthritis – Local weather info! (some other health conditions too)

Link with weather is something I have discussed a bit with people before, but I have always found that myself and Fave (RA!) have crappy joints at roughly the same time. The last few days – or at the point of starting this post – I was musing if I had flaring joints at the moment because the weather for my local town was showing ‘risk for arthritis pain’ :/ Turns out I was flaring because, once again, I am infected to shit. AGAIN. Cannot even tell you how frustrating this is.

I’ve been signed off work for longer, by Doctors who essentially think it is a bit ridiculous that I attempt to go back at the moment, when I have new ulcers popping up constantly. Part of the reasoning being that if I attempted to go back to work now and pushed my already struggling system I was more likely to end up flaring up or needing hospital treatment, or more time off in some form or another. So I have been keeping an eye out for infection. Or at least I was telling myself I was. Have spent the last few days being exceptionally tired – that kind of blurring into one long moment tired, where I honestly can’t tell you what I have actually done. I realised something was actually WRONG again Sunday morning, when for the second night running I slept on the sofa, which does occassionally help reset the aching a bit, as I must move around differently during the night. It also means I can get up more easily to get to painkillers – I can physically GET UP more easily as getting out of my bed requires getting off the bottom of it, which isn’t always manageable and some mornings takes a long time. Sunday morning I had a lot more pain than normal in my toes (Death Toe foot) and I had spent a lot of the ‘morning’ on the sofa, knowing I needed painkillers and food but unable to make myself stay awake long enough to get to them… I was then an absolute chicken and didn’t look at my foot for as long as possible. I was first going to do it after having some food. Then after having a shower. Then after… blah. Inside Friend came round. So couldn’t do it then as she utterly hates feet. So!  😉

Lucky for the drama cats amongst you, I am currently writing this in real time awaiting a call back from the out of hours Doc on the 111 service in the middle of the night. Ooooo UPDATE: another out of hours Dr coming to the house to investigate/presumably then take me into hospital?? Not sure if it works like that. FURTHER UPDATE: It doesn’t work like that. He basically looked at the big toe (an exploded gunky mess) by delicactely moving the dressing aside (had been put on deliberately so I could look without moving it all) and told me exactly what the three people on the line for NHS 111 had already told me/discussed. That it looked like an infection and I needed iv antibiotics. I like to think I can identify an infection by now…. Although yes, I took my sweet time in doing so. More what I was ringing 111 for was to confirm how to get admitted this time, as they can basically send notes of the conversation ahead and advise if you are to go to the out of hours desk or A&E; although every time so far, I have been asked to go to A&E.

The slightly alarming bit about all of this was that the local neighbourhood watch had told my Dad that a Doctor – specifically a Doctor, not even just ‘a strange man!! – had been round in the middle of the night (about 2am?) before I had even told my Dad I was in hospital/waiting to get admitted. I find the level of neighbourhood watch knowledge frankly creepy… I always have. Something that will be very delightful about the move to my house on the other side of town… Although I am quite sure they have neighbourhood watch over there 😦 Cannot underestimate their reach… Wasn’t really aware that anything particularly noisy had happened to alert them to the Doctor; I had even unlocked the door so they could let themself in and didn’t have to knock! Does this mean the neighbourhood watch will know if I get too ill one night and can’t actually alert someone through 111 for once?

So. Hindsight is a bitch. Having just re-read my last post (the one that took me two full weeks to write), I KNEW something was going on for the past two dressing changes, so that means I was suspecting it on the Tuesday, was still concerned and very tired/in a lot of pain on the Friday and had confirmation in the form of yellow gunk on the Sunday (a technical, medical term). Woopdeedoo for hindsight once again and the serious power of being an ostrich. On Sunday I had Inside Friend round, with the plan being to have some food and watch a film – and having someone else there made it more obvious to me how much my appetite had vanished and how zonked out I was – and how sore I was!! We had an incident as well. The Garlic Bread Incident. A frozen stick shot out of the bag from the freezer and nailed me right on the infected digits. Which made me go into the loud silence of someone suppressing some serious swearing, doubled over using the sofa arm to hold me up and going inwards to my carefully calm place. That was the point where I really should have then just bloody looked at the damned thing. Instead I didn’t, using the fact that Inside Friend hates feet as an excuse to put it off for a further few hours :/

I had a bloody good cry when I first saw it. Mainly an angry cry for the fact it was happening again as by that point I had had a LOT of oramorph. Yet another thing to add to the list of indicators something wasn’t right. I had gone from hardly having any oramorph to having some almost every time I had my other meds 😦 Now at this point I WAS going to put a picture of the toes. But it is honestly too bad… which anyone familiar with this blog may be startled by as I have shared some truly vile pictures of infected digits/my ill face 😉 These toes were really bad though and not cleaned up at all, fresh from dressing removal. Not good 😦 Or maybe I am just out of practice? It has been a while since any were oozing from several places!

So yeh I called 111 to sort out what I was doing. Then made the executive decision to sleep for a few hours on the sofa. During which time I had an insane dream; it should have been a good one! I was a medieval princess who started a skills contest with a number of eligible bachelors to prove that she was better than the annoying simpering wimps… and then just when the dream was getting more dramatic (a fencing match and already two princesses who got in the way dead…) I woke up with a start because the room started becoming several different sizes all at once and was smothering me. Turned out I was falling down the back of the sofa with a pillow over my face… Got myself a taxi into A&E and was triaged through the magical divide onto the main emergency ward pretty quickly.

So a nice point for two seconds (because a rant is forthcoming!) – I had had a tesco order due for the afternoon and started having a bit of a panic as I knew I wasn’t going to be in to receive it. So I looked at the cancellation policy and it said how to cancel but I was at that point about an hour outside of their cancel time 😦 I sent them a message through the contact form asking to redirect or at the worst, cancel the order and advising it was because I was in hospital and no one in to receive it… But was astounded to get an email back by 6am advising it had been cancelled and! The full order would be refunded and hopefully I would be feeling well again soon! They continue to be bloody brilliant all round for customer service and this made a crappy day a little bit brighter 🙂

So coming in wasn’t fun in the first place obviously, but it took a wee while to get a bed… I went via the normal day unit I go to for Rheumy reviews, where bloods were taken and I was fed and looked after until a bed was found for me. Then once I was admitted onto the ward I conked out pretty hard and fast as I was absolutely shattered. Someone… no one has admitted who yet! Told the Rheumy docs I was admitted again – so they all came to see me on rounds and basically gave me a lecture on having too many consultants. No “How are you feeling?” Or “Sorry to see you in again” – it was more, “This is the danger of having too many consultants” [this presumably in response to me being infected?! Or the fact that my on the ball Doc had already contacted them to say he knew I had been admitted and asking if I could have an MRI]. Essentially summarised by “You’re a smart girl, I’m sure you can understand that having consultants all over the country is dangerous, we’re saying it because we care about your care, you need to decide what is going to happen now you are admitted.” Erm…. Pretty sure I did a straight swap 😛  I said I knew another patient with vasculitis, for whom he shared care with Addenbrookes, and that this had influenced my decision – and was replied to with a “…or so he claims…” Ehhhh no you immature git, I know the patient! And! One of them said “a young Dr is he?” Like… what the actual fuck does that mean/difference would that make?? Wasn’t a happy bunny really, neither with the way the conversation went in terms of content and tone or with the basic fact that any of it was an issue in the first place. If you get admitted through A&E to your local hospital with an acute infection and a team happen to already know you, you don’t expect to be greeted with a pissing match on who is giving who instructions. Not when you have a rare, potentially very dangerous condition and have sought second opinions elsewhere.

I entirely understand that they don’t want responsibility for treatment choices someone else is making, but there were several comments made NOT getting repeated here that had me having flashbacks to morphine limbo in Oct/Nov… Wondering if I am mishearing as why on earth would x,y,z be relevant. Yes, it is maybe immature or silly of me to repeat so much of this here. But I don’t think that this is acceptable and want to make it a little more widely known WHY I requested to go to Addenbrookes so persistently in the first place. If my consultant is asking formally for his patient to be treat in a certain manner, crack on! Comments were made within minutes of the conversation starting about transferring me. Sadly that didn’t scare me as they maybe hoped, but instead made hope blossom inside me 😉

I waited till they had gone to have an angry cry. I knew it was going to be a tough first encounter, but I just didnt think it would be so soon.

ANYWAY. Happy ward stories… A new woman came lon the second morning who had a stinking attitude problem. I did eventually confirm through a chat that she had basically never been in hospital in her life – and you could tell. The fact she had not brought in any clothes or stuff to do or wash with etc. etc. was treat like the fault of the staff. Not receiving her food or her medication when she wanted it was outrageous – regardless of whether or not she had asked anyone already or if the obviously very busy ward staff were helping someone else first. She was clearly in a bit of shock at being told she would have to stay in for a while and that she was also going to have to amend her lifestyle for a while… But both of those were short term problems. She was surrounded by very ill people, three of us being considerably younger, considerably more ill and all of us with conditions that were requiring intensive drug treatment and were lifelong. It therefore felt wonderful when she got busted smoking in the toilets 😀 she did however still complain about not being allowed to do THAT! Pretty sure that is an obvious one. Many signs for example. Usually the case, no matter what hospital you are in 😉 The bit that particularly riled myself and another younger lass though (both furious on behalf of the other) was when she told us “please can you not have such a depressing, gloomy conversation? Not all of us are familiar with all of the medication and living in hospital!” – to two young women, both clearly delighted to have someone else who was a) their age, b) familiar with medical terminology and therefore properly able to have a full conversation at a point when we were both ill and c) both in a lot of pain and expressing how hard it is being admitted with a lifelong condition but an acute episode. She skipped many people straight to the top of my ‘kill list’.

Anyhoo; emails were sent, phone calls were made and I found myself on the Wednesday night wrapped within an inch of my life in blankets, strapped to a stretcher and on my way up to consultant’s hospital in the back of an ambulance 😀 Yay!!!

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TBC!!!

 

 

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***

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

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

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

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

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

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

 

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

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

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

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

#Iamstartingtowonderiftheyevenlovemeiftheycan’tbebotheredwiththepresentsIgotthem

#notsosureIamverygoodathashtags

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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