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 😀

Kath goes on a marvellous adventure to top off yet another week of medical shit and Death Toe gets another new friend.

So I had another post I was working on in ten min chunks for the last… week now urgh! – but honestly being awake (and not in a hospital) long enough to type has proved difficult… It essentially went blah blah medical shit blah blah hospital blah blah toe still falling off. Much like this one, except today has a surprise fun twist which is in real time. So has added drama n stuff.

Today I woke at 8ish, had a shower, banana, some drugs… Potted the rest and went to get Death Toe’s dressing changed. A now twice weekly fun event on my schedule. Until the little shit falls off anyway. But! Never fear! Someone will surely die to take his place 😮 For as well as Fester (on RIGHT big toe), today I have noticed ‘annoying new guy’ on LEFT big toe! An exact mirror image of Fester, except currently minus the infection. I’m sure Fester can give him tips. Could call him Gomez I suppose? I cannot express how fecking annoying it is to have your own toes persistently try and die for NO REASON. STOP. IT.

Theeeeen… Went to train station. A ten min walk that took me a panicked limpy 50 mins. In a LOT of pain as freshly changed dressing. And if I had given in and stopped for just one more swearing breather I would have missed it as I was only just in time by a minute. That is the furthest I’ve walked since September and it was horrible and Death Toe has been screaming at me all damned day as a result. Got the train (admirably well) to Carlisle, via Lancaster. Then got a taxi to hospital. Had a very reassuring lovely first meeting with a consultant that essentially went blah blah medical shit blah blah, the upshot being I’m a complete mess but he is looking into it. Had about a gazillion blood tests done anyway and got to flash all the stupid rash, ulcers, mottled stupid twatting skin… I asked about work and he was pretty amazed… Turns out just because your fit note expires doesn’t mean your consultant (or for that matter GP) were/are thinking you should be at work. Major duh moment for me 😦

Got taxi back to train feeling very tired but like I had achieved. Carlisle to Lancaster went well. Had call from GP and discussed above. As well as re work, seen as too much of an infection/hospitalisation risk for INR nurses to agree to monitor me at GPs. Despite Addenbrookes re requesting. So until I stabilise got to go to hospital several times a week 😣 Cannot even begin to describe how frustrating that is re travel organisation. I can’t drive right now and the GP surgery is about 100m away!! But also so horribly depressing, fresh on top of finding Gomez this morning, to know that a panel of practice nurses and my GP that met today all think I’m doomed to imminent recurrent infections right now, until this sodding drug starts working.

Speaking of which… Between him and dermatologist friend, horrible itchy rash bastard has been determined by consultant to almost certainly be an allergic response to the ritux 😕 Not a BAD one by any means – and since doubling the antihistamines a few days ago it is a LOT better… but it was super itchy and sore and I’ll need monitoring in case next dose does anything worse!! Gross pic for y’all without a toe for once. When I get signal anyway. Imagine you have fallen into the itchiest nettle bed ever and it is all over your skin and under your skin and inside your BRAIN and probably also in your frikkin eyes. Or it is at least around your eyes. So yep. Serious drugs are not fun, don’t get sick kids. OW!

Had a wait at Lancaster. Got next train. Started reading awesome book with beautiful tasting words and phrases – Daughter of Smoke and Bone – its only taken me… a few months to actually be able to read!! The focussing thing seems to have pretty much sorted itself, as confirmed as well two days ago by opthalmologist – compared to eye test done in November I bossed it! Although still not back to normal :/ I am blaming the pred defo.

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…and fell asleep. Woke up to announcement, confirmed rapidly by other passengers… arriving in Carlisle, next and final stop will be Glasgow.

SO.

CONFUSED.

Got off train (in a hurry!).

Not sure how I did this. Have had to redo the entire sodding journey from Carlisle to Lancaster. Covered it four times now today!! JUST back home now. Two and a half hours later than planned. Shout out to Dad of Fave who came and picked me up, two and a half hours later than planned. What a hero!

Have a giggle on me anyway. We bloody well all need one with that absolute atrocity of a buffoon inaugurated today!

[Featured pic was going to be a spotted fish but now it is my disgusted face as the man in front of me for several stops Carlisle to Lancaster (second time) had the plague and kept coughing, so now I will have the plague and I will die because I have no functioning immune system. Shame I don’t owe anyone nasty any money]

[Really, in all of the lovely stories in the world, me making an arse of my return journey would have served a higher purpose… and because I was reading lovely words, I was half wondering if I would have a magical moment on the fated second train journey and meet my soulmate… Or find a million quid… Or a box of kittens. Sadly, I can confirm that not a single one of those things has happened]

 

 

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***

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Being home is fab :)

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

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

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

Herval looks amazing in a scarf by the way…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I’M FREEEEEEE!!! 😄

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

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

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

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

EDIT: Went with Herval 😉

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

THE GREAT ESCAPE!!!

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

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

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

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

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

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

Happy Kath!!!

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

Bringer of dreams…

 

 

Fri/Sat/Sun of Week 7 – & Day 50 marking the start of Week 8!!! ****DEATH TOE AND HIDEOUS FAT FEET PICS WARNING***** Kath gets older… Bits of medical stuff… Her feet go all giant and ick :( Mostly a massive rant about my new nemesis :D

This started as another collection of rambly bits of notes collecting up for a few days from Friday onwards, but given my preference for typing at night and the difficulty I have had doing this – for various reasons, one rather more prevelant lately 😀 – I have once again ended up not managing an entire post until today and it has ended up a little rambly…

Friday was my birthday and was a very lovely day, with a surprise parent visit that made me do the happy tears thing… I had my first ever cornish pasty for lunch in the WRVS cafe and then had a nest of parcels and cards to play with. If I had still been in limbo-land up North, I think I would have found having a birthday in hospital very tricky, but as it was, I had so much love splatted on me, not even the plasma exchange and the methyl pred iv dampened it! Dad was also amusing me by being fascinated with the PEX machine in typical absorbed engineer fashion – who isn’t!

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‘Appropriate card’ rating is HIGH – love bananas until I can smell them. Then NO. Extends to banana flavoured or scented anything… Makes me want to hurl >.<

Whilst on PEX you get twice daily blood tests. Friday had been day two and the test that night showed my fibrinogen levels were a bit low. My Saturday morning test result was then really not so brilliant, so I spent Saturday morning getting PEX followed by two bags of this interesting goop called cryoprecipitate, which is the only way they can really boost your fibrinogen levels by iv short term…

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Saturday, one of the ladies in the support group came to see me, bearing gifts including chocolate brussel sprouts  😀 I am apparently becoming known for having a hatred of the brassicaceae family of plans, as well as my love of unicorns and glittery colourful tings… There are worse themes 😉 This meant some very much appreciated company during the boring sitting still part, all the more needed when I was then told that because my clotting factor levels were low, I wasn’t to leave the ward – preferably not my BED for the rest of the day in case I fell and didn’t stop bleeding :/

I had the last night of the methylprednisolone iv three day treatment on Friday night and had by then picked up on feeling distinctly unreasonable in terms of irritability… This is apparently a common side effect of the methylpred – see below for what this looks like analysed and dwelt on out of all reasonable proportion 😀

The OTHER side effect of the methylpred that became horribly apparent on Saturday was that my feet/legs and to a certain my entire person have decided to go down the fluid retention/oedema route… Think ‘pregnant lady swollen ankles’… Now this is a blog first and foremost for ME as a record of all of this, but I am also aware that a lot of people of varying ages, who both do and do not have vasculitis are now reading this… and I think it is pretty important to not sugarcoat any of this. SO yes, this is ick, but this is what has happened to my once slighty less hideous feet and can be very firmly blamed on the high dose steroid iv I have had to have for three days to stop my body from trying to kill myself.

To confirm for any smart arses, whilst I may never have been… slender… I have never had what can sadly only be dubbed cankles and now I am on day three of giant elephant feet and ankles 😣 Saturday night was spent on the phone, hiding in the day room so I didn’t murder anyone, bemoaning the above hideous situation. By Sunday it became apparent that it is not just my feet that have puffed up, but my legs and to a certain extent my face and hands as well 😡 This also means the punch biopsy wound from weeks ago has inflamed up and started looking shifty… I mentioned last blog that the plan was for dermatology to do a deeper biopsy.  No longer looking as likely I would think… High dose steroids increase infection risk and the added bonus of shifty clotting means it would be a bit dangerous. Similar reasoning, amputation also still looking unlikely 😢 This sort of means I may start an immunosuppressant treatment now without a diagnosis!

I shall desist speculating anyway and confirm once I have had an affirmative Dr update 😄😄 Which hasn’t been today in terms of an actual firm plan being confirmed, although I did get to meet the head of the vasculitis team today, the one who received my rather desperate email weeks ago and who is technically in charge of me now, but in a very much ‘whole team collaborates together’ kind of way, which is fabulous! We both played it cool. He didn’t beg to see Death Toe. I didn’t thank him TOO profusely for getting me out of limbo-land… I would like to think we had more of a subtle smile and nod type acknowledgement, partly as I was absolutley determined not to come across as the stalker portrayed in the referral letter my previous Dr had sent!  His plan is finish PEX tmrw (Tuesday), review blood results after that and maybe possibly do another round… Speaking of blood results, whilst still on PEX having twice daily full immunology, full blood count and clotting factors. Currently without a cannula – although still  have the awesome tunnel line in for PEX – but the level of stabbing means my veins have just given up now and the vampires are resorting to places like knuckles to get at squishy veins! The lass who got me this evening however found a ‘flouncy, palpable’ vein below the crook of my elbow and was very smug 😀

Based on what we discussed during rounds, a lovely lass appeared within an hour and did an ultrasound of my heart (echo) and from the list of things being rhymed off, I am due some more angiograms. Echos are a bit weird – you get rather cold goop all over your chest/under boobs but then it makes the awesome wooshing noise – she confirmed that yes, it is a bit weird to fall asleep during mri scans and ultrasound scans so easily haha so I need to work on not drifting off as fast… Once she had finished with me, I went down on a very gentle walk to the concourse and FELL ASLEEP IN A CORNER IN COSTA HAHA 😀 For at least an hour of on/off head nodding and serious chunks of flat out!  Hats off to all of the Drs who were sat round and ignored the obvious escapee with tunnel lines flapping around k.o’d against a wall 😉 Nice doctoring! I returned assuming I was in trouble but I think the staff are quietly aware of how much I needed to get away from… My immediate surroundings… So they just confirmed I was to be whisked down to the opthalmology department and booked me a porter! They did the same checks as previously, to check for any vascular reasons as to why my perfect vision is now distinctly imperfect. Nothing has shown up just yet, except to have it confirmed that I have basically gone from fabulous vision to ‘are you sure you were never told you needed glasses?!’ in the space of less than six months…. Quite possibly just the steroids doing something, but would rather know for certain. This involved the amusement of eye drops to dilate my pupils, after which I could hardly see a thing, but the ward staff assured me I looked “high as fuck” haha – so I took a picture, and yes, I look very very spaced out!! LOOK AT THE SIZE OF MY PUPILS!!!

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I also then did another mega floop in the waiting room and was asleep there getting chilly for over an hour apparently, so when someone wheeled me back up, I was super super stiffened up >.<

****ICKY NECRO-DIGIT PICS BELOW****

For the discerning and dedicated fans, Death Toe had a dressing change yesterday and I did the usual photoshoot….

Note the beautifully demarcating lines… The ever widening cracks – delightfully fun when wrapped in a nice big soggy inadine gauze 😄 The nerve death pain that used to radiate through my whole foot and leg is very much ending, signalling the emotional end of the relationship. Now its all about the practicalities!! Who keeps the silver tableware? Do we sell the car and split 50/50? Do we take turns about with Voldetoe at Christmas and New Year? The featured pic of the day is a very biologically representative image of Death Toe being replaced with a carrot. As well as having a problem with sprouts and cabbage and loving glittery unicorn things, I LOVE raw carrots… SO went off on daydreams of how easily I could eat Death Toe off if he was a carrot, saving the awkward amputation begging 😀 It is weird being stupidly stiff and sore, having giant puffy limbs and feet etc. and still being able to get said feet into my mouth in seconds should the need to eat off a toe arise 😀 and yes, I did just sit and double check for scientific purposes.

KATH AND THE NEMESIS!! (I don’t even mean Death Toe!!)

The one slightly annoying bit about my birthday was that the sheer level of messages made it quite tricky to reply to everyone in conjunction with having no time to myself. It would have been possible easily at home and I am enough of an insomniac that I managed it anyway… But Friday was the beginning of some seriously passive agressive/annoying  comments about me being tired and needing to go to sleep, when actually what I wanted was some personal space to talk to my friends!!!

If I am going to have a nemesis I decided I should do it properly… I am normally sweet and delightful and downright door-mattish, but everyone now and then I do develop an unreasonable irritation/hatred for someone. Either that or it is the methylpred…

So this is all now going to be downright ranty. When I was having a wee type last night, I was thinking maybe I was being harsh… My nemesis was upset first thing this morning that she wasn’t allowed home today (Monday) as a Dr had suggested was a possiblity – she cried with disappointment,  I also welled up in disappointment… I was feeling like a complete cow and was going to delete all of this and decided I was a bitch.

…and then this morning we once again had a repeat of The Great Tea Discussion and I had to listen to a conversation that coming from anyone younger or not in a hospital bed, would had led to me dubbing them a racist bitch… I can understand people feel strongly about their tea – and coffee as well apparently. But you do NOT get to bash on and on about ‘foreigners’ being unable to make ‘a decent cup of tea’ for days and days back to back – at the very very very least have the modicum of decency to wait until the variously deficient ‘foreigners’ have left the room? No one needs to hear that type of chat about them first thing in the morning! As a mark of just how strongly this upset me, have a look at this beautiful bit of unsolicited conversation sent to a friend whilst I was trying to simmer down 😀 I am a delicate ladylike flower!!

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The rather indiscriminate application of the term foreigner is actually a saving flaw in this instance as you [Ohh look now I am ranting directly AT her :D] clearly do mean literally anyone who was not born in your town. Sooooo much patronising and condescending as well. Have also had to listen to conversations along the lines of ‘the lower paid workers’, ‘a good thing jobs exist for people who can’t do anything else…’ – it is all massively boiling my piss!

I also felt a bit cheesed listening to you ask for ‘a single rice krisp to try’ – I would probably have found this cute or amusing if it hadn’t come out of your face shortly following the tea incident. You were also doing it in a very attention seeking manner to draw attention to your plight regarding the inedible porridge. The porridge you had adored the day before. One day of gloopy porridge does not constitute an excuse to be so RUDE about the person making your ungrateful ass breakfast, or to be so ridiculous as to try A SINGLE RICE KRISPIE when you can plainly see that it is minature and of that bland beige that automatically means it tastes of nothing.

[I had always really thought I was overly nice – I have some friends who tell me so quite a bit in an attempt to get me to grow a spine – now I think I just perhaps have a longer fuse than most people. I don’t actually feel like I have even reached it, as all that has happened is I have become a two faced bitch and am only being SLIGHTLY moody and less overly friendly to the face of my nemesis and to the extent that she probably hasn’t realised. This in itself has made me angry as I pride myself on not being two faced but actually I can’t really justify upsetting an ill older person by telling it how it is, when I am probably overreacting and displacing a lot of angst onto her personally… I think if it makes anyone feel better about me being a nasty person now, I have decided to fully cultivate her as my nemeis in part because she is the only person around me who has pissed me off in the last seven weeks who does NOT have the excuse of dementia or illnesss, or have the dubious protection of having been in charge of my medical care…]

Rant resume!! I cannot stand hearing you inform everyone that I am not feeling well/am tired/am in a bad mood/am upset because my parents had to go home/I had some bad news off the dr etc. etc. etc. in a mix of passive agressive or possibly just very well meant and unappreciated concern and ignorance that I can overhear VERY WELL through the curtains, when actually I just don’t really like being visible both physically and emotionally, 24 hours per day to complete strangers, for the seventh week straight.

Which brings me to the bit that has actually REALLY irked me the last few days. When a Dr or a nurse wants to talk to me – or anyone for that matter – and the person has their curtain drawn, they say ‘knock knock’ for lack of an actual door and respect the fact that I clearly didn’t feel like being exposed. Several times now I have turned around or woken up to find you opening the curtain between us a little, along the pretext of it allowing the fresh air from the window to reach you… Well, no it doesn’t. Because the curtain on all other sides of me is still shut, so all you have done is open up a small half metre wide window between the two of us that I dearly dearly did not want opening. The only possible thing you would accomplish from that is to let my exhaled air reach you more easily. If you would like some fresher air, go closer to the window? It is a BLOODY WIDE ROOM, my little square of drawn curtains are not preventing you from getting fresh air.

Ohhhhh I love the staff hahaha she just pressed her buzzer for about the third time for absolutely no reason in the last hour [this and the below all being Sunday night…] (the previous time was, for example, as she had dropped a blanket that she wasn’t actually intending to use off the side of the chair), to complain that she needed the toilet (not ‘please help me go’ but ‘I keep needing to go’) and couldn’t get to sleep…. and was very sincerely offered a hammer haha 😀 This was in no way done in anything other than a lighthearted joking manner but it missed being picked up on completely, as she wasn’t listening to anything anyone else said as per usual 😀 I think she literally just cannot cope with not being the centre of attention at all possible moments!!!

Reasons why my overhead lamp is not to blame for keeping you awake…

You were happily asleep snoring your precious little head off for several seperate chunks of time today, with allllll of the lights on, many people in the room talking and maybe just possibly don’t sleep during the day if you are finding it hard to sleep at night and are bothered by this fact?

You were in fact fast asleep WHILST MY LIGHT WAS ON (as has been repeatedly the case for the past week before waking up during the night many times) before your tiny bladder woke you up/someone came to shove a new cannula in your arm/came to take blood from/came to take your blood pressure/you woke up because you knocked a jug of water all over yourself/ etc. etc. etc.

It may be stopping you from going back to sleep… But that is NOT THE SAME THING and I have immediately turned it off and am sitting wide awake in near darkness, making many annoying typos as I cannot see the keyboard, in the very sincere hope that you soon start snoring again and I can turn it back on.

Ok… You are blatantly having a snack now at half-past midnight. The light is going on for your own good so that you don’t choke on whatever you are eating…

Now I have once again heard the very loud mutter of “Kate… Kate… Are you awake?” Yes. But very very few people get to call me Kate, so please appreciate that that is not my name. No, that is not my light. Yes, it is my laptop screen. Yes I am aware that you are awake. I am also aware of the many reasons you are awake AND that you believe this to be solely attributable to the muted light coming through the curtain.

Rather than get snappy following the above, I made a bit of a life changing decision yesterday night (WHOLLY endorsed by one of the staff who overheard the convo) and packed up laptop and phone and decamped to the beautifully lit day room over the hallway. Really wishing I had thought of that days ago!!! 😦

Having had several floop sleeps OFF the ward today and spent time away, I am not feeling anywhere near as murderous – although this could also be due to having had some time to recovery from any irritibility attributable to the methylpred?! I think I partly came to the realisation that although I can happily crash out in the middle of a waiting room or busy cafe, I can’t sleep during the day or easily at night in my ‘room’ because everyone has managed to make it so shitting obvious that there IS no such acceptable thing as personal space or privacy even when curtain are drawn!! I basically don’t feel comfortable falling asleep on my own bed, unless I am certain everyone else is asleep. This isn’t conciously done, it just seems to be how my brain works in hospital!!

…and breathe!

Ending on a happy note: I HAVE FINALLY FINISHED MY FIRST MITTEN 😀 It fits and is comfy and I love it… Had meant to do k2p2 rib at the top, but realised a few rows in that I wasn’t working in a multiple of four, so instead managed to acheive some kind of gorgeous staggered moss stitch that I would never ever have accomplished on purpose. I do at least know what I did to get there, so I can make the second one to match 😉  EXCEPT! Within five mins of finishing I snapped a needle 😀 So will be taking a few days break whilst a new pair arrives 😀 LOOK HOW COLOURFUL THAT WOOL IS!!!  …and how ill I look hahaha just sometimes I look at myself and think yep, you are an absolute mess! Had a moment with the Dr when I was apologising for my inability to give a postive blood test and he was saying he sees quite a lot of those cases here… and then I said something like ‘…but I suppose my toe IS falling off… and it is the fifth one or so to try… so I guess I AM ill…’ I still have weird days where I feel like because I have no name for it and no one knows about vasculitis and no one can SEE 90% of the pain and symptoms, that maybe it is all some weird fantasy thing I have managed to imagine… But then my FRIKKIN TOE IS FALLING OFF!!!

EDIT: You know when you are feeling smug because you made an awesome mitten? It was about 1.30am and I was starting to feel a bit sleepy and debating on trying to turn in… and a very nice Dr came to see me and I swear I predicted the conversation 😦 Turns out the blood tests from this eve showed, surprise surprise, shitty fibrinogen levels- so guess who just got a new cannula?? It took four attempts – my veins are truly now that tragic – and I honestly think that is gonna be over 30 now in the last seven weeks? If I counted failed attempts, it must be over 50… So yep. Good thing I was nicely awake anyway… As nothing wakes you up quite like repeatedly having needles stabbed into you! I now get the absolute pleasure of one or two bags of that cool orange cryoprecipitate stuff (see above pic) wanged into me for the next few hours – once it has defrosted apparently! 😀 Woo and indeed hoo. Time to crack on with the HP & the Philosophers Stone audio book methinks – thanks Mom!

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