Snow-way!! O yeah, it snows properly in Scotland ;) In which Kath hits up the hospital for some more toxic sludge, builds a snowman and has managed – da da daaa!! – to get TWO SHOES ON!! – for the first time in at least five months :D

…although to be fair they were Dad’s shoes 😉 😄

So as per the plan, last Monday I was scheduled in for a full day back at the hospital for dressing checks and dose two of cyclophosphamide – along with the various other bags of stuff you need at the same time to stop you projectile vomiting and protect your bladder from the chemo.  I woke up horribly early (5.30am… So genuinely, horribly early!) and then as NOT PER THE PLAN, the car windscreen wipers were not working, despite two return visits from autoglass to fix them previously, after an accidental breakage during a routine windscreen replacement… So given I was still not feeling mega swish post-hospital anyway, Mum’s stress levels went through the roof as she was faced with a two hour journey on the motorway, in the rain, without a properly working car and a whiny delicate passenger, with a lot of people waiting to put drugs into the passenger… After a very nice polite conversation with customer services (using the calm voice that probably came across as very reasonable, but would have had myself and my two brothers peeing ourselves) we hopped (literally haha) into the rather erm… interesting… Landrover and went and got a hire car for the motorway bit and got down only a few hours late! I say interesting; now Dad is very fond of the Landrover, but it has a roll of duct tape in the front for a reason and it rains inside when you go round corners 😀 It also isn’t very easy to get into, but with making some epic huffing noises I have been managing to do some sort of scrambly “HUP!!!” type thing that a week or two previously would have been completely impossible. Autoglass are in trouble 😉

All the drug stuff went very well, although I am fed up of having knackered veins 😦 The inside of ones wrist is NOT a nice place to have a cannula in for hours. Bruising up like a peach still, several days later! Got a whole load of bloods taken and they were all spot on target, so I was allowed to proceed with all of the litres and litres of drugs – saline, something called mensa to protect my bladder and kidneys… Some anti-sickness thingy (ondansetron in liquidy form maybe?) and the cyclophosphamide itself. I was absolutely awash. Mum did little bits of nipping into the town centre, exploring hospital and nattering to keep me from dying of boredom. Dressing changes also went nicely – stitches out of both Toe Gap and The Wound – getting them out nipped like stink and The Wound is so epic it has needed steri-stripped and further dressing checks since and looks like it is probably going to leave a fairly fabulous crater type scar…

Hats off once again to the ward staff, they were very sympathetic and understanding about us being a teeny bit late – especially the wonderful lady who had already come in on what had been booked as a holiday to administer the drugs for me, as only a tiny handful of staff are allowed to handle the chemo until they have had a few supervised training sessions. The other car still isn’t fixed, but thankfully the only use the Landrover has been required for whilst Dad was away has been local trips to GP five minutes away to do my INR checks (every bloody two days) and dressing pokings. Warfarin is going well!! I am so far alllllmost managing to stabalise at about 5mg a day, so just tweaking a smidge to get me slightly higher into the 2-3 target range and then I might be able to get stabbed a little less often!!

Other than regular INR stabbings, I have managed to spend most of this week on the sofa getting rather worryingly addicted to Criminal Minds and NCIS – and have nearly finished the trilogy Fave lent me!! Also being at Scotland home, I have had a chance to eye up some books to take back down with me. Not that I am in any way short of books down at England home, but the heart wants what the heart wants 😉  Mog continues to thrive under the attentive love and care she receives when there are witnesses and other feeders…

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The precious angel is SO deprived; she was ecstatic with glee about being presented with a box of her very own and has spent the best part of the last 24 hours in said box, so that no one can take it off her. Poor baby. I had a wobbly few days post-chemo – Tuesday in particular I spent the whole day on the sofa trying not to puke. Only salt and vinegar pringles made me feel any better! Mum is a very wonderful Mum indeed, but her rather scary response to me whining about feeling sick  was to threaten me with immediate eviction if I puked on the carpet 😀 Since then I have been getting more ‘tiggerish’ as Mum puts it; just slowly getting back to feeling a bit more like myself. I have been trying to use my stick a lot less and pottering around the kitchen playing football with the cat has helped! I also had a very fun day washing a bath full of giant lego we picked up from a charity shop for my baby cousin… SO MUCH FUN 😀

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…and then as is probably obvious from the main pic and title, it snowed one day for hours and hours and because it is bloody freezing up here, it settled and I went OUTSIDE and made a snowman 😀 Yes, that is genuinely a snowman. It may be small and its eye and grass scarf may have fallen off in the time I went to grab my phone to take a picture, but it was too bloody cold to fix it and I have to be very careful with the cold so my fingers and more toes don’t fall off. Stop being mean and don’t bother with the comments about it looking like a turd, I’ve heard them all already. IT’S A SNOWMAN. The other exciting bit about that was that when I went outside, I grabbed Dad’s shoes and had two shoes on for the first time since… At least the start of October!!

Plan is currently to head back down on this coming Monday I think… “About bloody time!” Said Mum… Yeah, yeah, yeah… Pretty excited to see friends again 😀 In the meantime, the dressing on The Gap (which was a token bit of gauze for the last two weeks anyway) came off this morning! I now have two socks on and no foot dressings needed, so for the first time since JUNE – and I am not even slightly exaggerating!! – had a shower WITHOUT A WATERPROOF GIANT SOCK THINGY ON!!!! This went very well and although I was wondering how weird it would be, it was very much taken in my stride, as the more interesting/distracting bit of the shower was how much of my sodding hair is coming out 😦 The info on cyclophosphamide said it tends to cause hair loss in at least 30% of people and I had already had a bit of an impact off the rituximab from December… With ritux being a lot less toxic. So I was sort of already braced for it to be honest. It said it takes three to six weeks to start falling out if it is going to; I am now getting to about three weeks since dose one and the last couple of days it has been coming out at quite an alarming rate, every sodding time I touch my head. So showering was quite amusing! I genuinely do mean amusing, because for whatever mentally certifiable reason, my reaction was to giggle :/ I  guess it is better than me having stood in the shower bawling my eyes out, but I don’t really understand why I am finding it quite so funny!! I don’t exactly put a lot of effort into my hair – it never gets straightened or blow dried or dyed etc. and as mentioned before, I don’t even use a hair brush or dry it after a shower, but I am going to have to have a serious think about what to do now!! I don’t want to scalp it all off immediately, as it really could just thin out a lot and settle there… But it definitely needs a lop – question is, how short?? If I was a delicate little waif – and having naturally curly hair, I would obviously go for a crop of ruffled ringlets that would make me look like a pixie… But if I am brutally honest with myself, I would struggle to look very pixie like and it would likely instead make my face look rather horrendously round 😀 If anyone wants to volunteer to attack my hair, be my guest as it very well may all fall out a few days later anyway 😉

To round things off for this post, amuse yourselves with my Dad’s reaction to the news of my hair falling out this morning… “Ohh, that’s not good. You will be careful to look after the shower drains, won’t you?!” Ahhhh Dad priorities 😀  He has also suggested more recently, whilst watching a former school rugby legend (two years above me, so I sadly can’t claim friendship :D) captain Scotland to DESTROY Wales earlier hehe (stop crying Maria), that I should get a prosthetic toe to smuggle drugs in. It is an absolute wonder to myself and everyone else after reading this, that I have turned out SO WELL ADJUSTED. Or will at least explain to the sceptical scoffers, quite why I am a little bit weird…

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In which Kath got to go home, the cat is DELIGHTED as no one else ever feeds her (apparently) and so far not been infected for over a week!! (Voldetoe is threatening it, but doesn’t have the balls just yet, as in the hospital again on Monday…)

So last post I was expecting to maybe be allowed to go home for a bit… That then got delayed a smidge, as I had a pretty bad weekend. I had a biopsy taken on the 9th, the day after the amputation and it hardly hurt at all to begin with and I was feeling pretty smug… and then it started to hurt like crap and get pretty bruised and inflamed. I’d share a picture, but that zoomed in, its pretty icky seeing my hip haha 😀 Weird, I can deal with the actual wound no problemo, but seeing my skin that close up grosses me out for some reason. Maybe I just have really gross flesh? Any ex-boyfriends care to weigh in?? I AM expecting to have a fairly exceptional scar, as it is a good 5cm long slice with quite a few stitches along it! If it were to heal without being fabulous, I think I will feel rather cheated. The bugger has been more painful than The Gap! More stitches… Easier place for me to pull them… So understandable, but I would have assumed an amputated digit would be more sore than having a chunk scooped out of you :/

 

Anyway, massive tangent there. I was feeling naff and what I was vaguely describing to ward staff and Docs as ‘infectedy’ so they gave me a few more days of observation until I was perked up again. It could very well have been all of the drugs from anaesthetic and chemo etc. still in my system walloping me; by Tuesday, my bloods were looking rather fabulous (although white count etc. royally flattened post chemo) and I got the all clear to go home Wednesday 😀 My appetite had come back as well, so I was managing to eat actual normal (some would say excessive) amounts of food again and blood pressure started behaving again… Although a single coffee managed to knock it from approx. 130/85 to 165/110!!! No coffee for me for a while then 😉 Mum did her SuperMum act again and came down to get me (so much driving!!!) and we road-tripped back up and I got to see my special little friend Mog again 😉 She cried she was so happy to see me. (She actually did, but probably because she was hungry).

Home meant checking still temp registered at local GP as being on warfarin now means very regular blood tests (three times a week until stabilised) to check how dodgy my blood is. The thought is currently that I have a coagulation problem as well as what is being dubbed livedoid vasculitis of some description. That in itself isn’t technically a diagnosis, it is more a description of what is going on with me. A bit of casual research reading medical papers and journal articles etc. (as I am prone to doing sometimes… Uni left me with serious dweeby research tendancies!) has resulted in me deciding I have the most mottled purple zebra markings in the universe. Of all the people in the world saying they have livedo reticularis (the fancy name for the mottling I get) no one has it quite so fantastically as I do 😀 Maybe shouldn’t be feeling smug about it, but it does explain why all of the Docs were calling me medically interesting (I laughed, said “you mean weird” and no one corrected me…) and one of the junior Docs came to see ‘me’ *my mottled skin* and said she had printed off some articles about it, which is always nice as it shows she still has curiosity about things she hasn’t encountered before 😀 The warfarin is GOING TO WORK anyway, so it is likely I won’t have quite so exciting mottling in future and it should also hopefully mean that my blood is thin enough to get down to my toes and fingers a little more effectively… So they will STOP GETTING ISCHAEMIC and therefore STOP TRYING TO DIE. Fester, Voldetoe… Stupid Finger… Are you listening??? I had an INR test on Friday anyway and by Friday afternoon everyone had had a chat and I got my next few doses, so the system worked 😉

Hmm… This is a largely cat based blog post haha – I have spent a very large chunk of time whilst at home feeling twitchy because I hadn’t updated this blog for a few days, reading (on the last of the Daughter of Smoke and Bone Trilogy – AWESOME!!) and talking to Mog.

Other Mog activities include apologising to her because I am not allowed to feed her as much as she needs, meowing at her constantly (which REALLY REALLY ANNOYS MUM hehehe), brushing her with the comb taped to a stick so she can’t eat me and playing ‘football’ with her with various colourful, sparkly, jingly ping pong balls. That largely involves someone kicking one to her whilst she then bats it back (almost always to your feet!) again and again and again… She is pretty fab at it (I said proudly, sounding like a demented cat owner…) and it is pretty good ‘physio’ for me, as it has meant moving around the kitchen without using my stick and giving everything a bit of a stretch. I was already managing a bit more walking (with stick) before I left the hospital, but my general strength is coming back pretty well in terms of energy as well. Somewhere I am comfy with, like the kitchen space here, I am happy enough moving around without my stick as I don’t feel nervous about falling, but I am still trying hard to walk ‘normally’ and failing as I keep automatically keeping my toes off the ground and all of my muscles and joints are still being generally sore and stiff ANYWAY which doesn’t help :/  Every couple of mornings (today being one) I have a really bad one and can barely move when I wake up, because my back feels like someone has pretzled it into a twist; but once I have stopped tensing at the pain, wanged down some drugs and loosened off a bit, I am normally a bit better by midday! Re drugs, I have managed to cut down a smidge on some of the painkillers and have my very own holiday drug box 😀 The rest are getting rescued when Dad next is down in Cumbria, as I will still be up here for a bit, so might as well use the time to sort out the ones I no longer have to take.

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So yep. I am here for a good few days. Monday I have to be back in hospital for a long day of reviews from various departments and a delicious bag of chemo… The second dose of cyclophosphamide. Kind of hoping to have at least the cryoglobulin result back by then, but the biopsy results will take AGES as I am pretty sure the chunk of Kath flesh was sent off to Newcastle for immunoflourescence tagging…?! Something fun like that. I think they tag the immunoglobulins so they can see what is happening, as well as investigating the damage to various layers of the blood vessel walls etc. Will find out more, as that is probably a load of nonsense 😀

Mum and Dad have both jumped on the ‘toe gap’ game wholeheartedly; Dad’s latest is that Death Toe has gone on his gap year… Mum and I spent a good few minutes deciding which piggy it was – the ‘stayed at home’ piggy, which sadly doesn’t lend itself as well to jokes as if it was the ‘gone to market’ piggy. Very mature. Mum also just pretended to be a hoover before, so that we could chase the cat out of the kitchen and open the door into the rest of the house, as the woodburner had the temp SO HIGH in the kitchen, I was nearly being sick 😀 She makes a spectacular hoover. MUM’S favourite toe/or lack of joke, is suggesting that I can now play that weird knife finger stabbing game thing you always see scary guys doing in shifty underground pubs… Or prisons… (In films I should add, I haven’t actually ever seen anyone other than a few drunk silly friends even NEARLY attempt it!). Only, I am to do it with a sock on and ‘miss’ to obvious general alarm and outcry. This discussed to the point where I was ‘planning’ it this morning whilst lying all pretzled up on morphine, trying to decide how much to scream when I stabbed the gap and what socks to wear 😀 😀

Speaking of socks, I can actually wear them again without them leaving an imprint in my ankles, as the ridiculous level of swelling/water retention has FINALLY gone down 😀 I have normal sized ankles again and you can once more see the general shape and tendons in my feet 😀 Assuming all goes well and I manage to stay out of hospital for longer than a week (not done very well at that in the last six months :/ ) I am going to TRY and go to a symposium conference event organised by Vasculitis UK at the start of March. It will involve a careful balance of getting there and back in one piece and NOT OVERDOING IT, but I am very excited to get to meet some more of the support group – AND – there is a formal dinner/ball in the evening so I am going to have a shower and wear a dress and feel like a human being for a change!! The last time I tried anything that involved socialising anywhere but a sofa will have been Solfest, which I spent a lot of crying because I couldn’t handle the pain from Death Toe… Even prior to that I had largely given up leaving the house, so this will be interesting to see how my energy levels manage, as talking to people etc. has also become something that saps my energy pretty bloody fast, let alone coordinating all of the getting there, hotel room and the physical staying awake/pain side of things 😀 A challenge that will hopefully not backfire. Wanting to start phasing work hours back in soon and it will be a pretty poor bloody start if I can’t manage a day sat in a seat and talking to people :/

Ahhh so much cat chat. As a final point, please once again have a think about being a good egg and donating some pennies to Leetle Broo and his team for the Edinburgh Marathon. They are fundraising on behalf of Vasculitis UK and are POSSIBLY going to do the run dressed as unicorns haha – I have endorsed that plan. Waiting to see if it happens 😉 Mega thanks to everyone who has already donated. Massively appreciated xxx

Leetle Bro running for Vasculitis UK – JustGiving link!

 

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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TBC!!!

 

 

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

 

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

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

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

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

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

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

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

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

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

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

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

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

Good effort Kath kidneys!

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

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

Good effort Kath liver!

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

Xmas is over! A new year has begun! ***Icky toe pic be warned!!*** Kath goes back to Wolf Town… and manages to be in A&E AND ADMITTED TO HOSPITAL – WTF!!! – only a week into 2017 – and it isn’t even Death Toe’s fault!!! 😮 Everyone meet FESTER!!!

 

 

My return home from Scotland was a slightly less stressy affair than my trip north had been… The car got loaded with all my xmas booty, the volume of which horrified Dad – and my post xmas booty 😄 (thanks cheesecake) and Dad wasn’t being tipsy and fiddling with the radio… I got a chai latte as well at Annadale 😄 Good times.

Within a few hours of getting in, Mum single-handedly annihilated Christmas, taking down the tree in a scary blitz of late night anti-festivity that I hope was therapeutic in some way… It amused and scared me in equal measures. It took the girls and I six days to erect that masterpiece and maybe an hour for her to remove all evidence, except a drifting of needles 😕

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Christmas beauty 2016

She did comment on how SOME of  my bauble choices were tasteful… It made me both suspicious and warm and glowy to hear her say that. Normally she says very mean things about my colour coordinating and style choices!! Each year I add a few to my collection, something we did at home always, picking one each. Last year I didn’t ‘tree’ because I was sulking (2015) and this year I was in hospital for eight weeks beforehand. This made me go into a delirious morphine induced Christmas frenzy and I got loads and loads of awesome baubles. My faves were Button Guys 😄😄 Mum even approved!!

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Button Guys!!!

So being home again post-Xmas was lovely, but parents were sticking around for a few days to do a lot of work on my house – I got to see it! – the bathroom is getting some serious attacking and we variously spent hours either wiring and doing actual hands on house stuff (guess who didn’t do that bit 😀 ), or perusing catalogues for towel rails, baths, sink and toilets… I am very much under a fairly aggressive eviction notice, which is verbally reinforced several times a day with comments about how colourful all of my crap is 😀

Why Wolf Town? Fave finally made herself an etsy site 😀  Wolf Town Art I was loving all of her arty bits and bobs before xmas/whilst in hospital before and showed y’all a fair few – and she hasn’t yet stuck up a lot on her etsy site (I will work on this………) but the name ‘Wolf Town Art’ is  based on the history of our town and its a tale that has instigated quite a few magical flights of fancy down imagination motorway 😀

I came back very excited about seeing friends again after Christmas – and a bit more thoroughly, as before Christmas I’d been quite wacked from coming out of hospital and was fairly useless at seeing people. I had all sorts of civilised things planned in my mind and was spending the weekend first with parents doing gentle bathroom picking etc. Choosing a bath is horrifically hard by the way. I can understand why people walk into B&Q, point at one and walk out. I found this particular description on a website which massively tickled me though. They probably assume no one reads the descriptions, but I do and this is why 😀

“A simplified bathing solution from Trojan is ready to rock your bathroom in the form of Derwent Single-ended Bath. This sensational bathroom element would be an ideal choice, as it not just enhances the aesthetic value of your bathroom but also fulfils your practical needs with its superior strength. It exudes immeasurable opulence to the bathroom and promises to deliver great bathing pleasure like never before.”

Ehhh yeahh 😀 Who wouldn’t want immeasurable opulence in their bathroom? 😀

Anyway, my social, life dunking plan all went to crap… I was getting rather knackered last few days in Scotland to the point where I wasn’t doing much and then slept the whole way back in the car :/ Then I was increasingly stiff and sore when back at home and was struggling to stay awake, getting irritable about everything and avoiding family feeding fests because of everyone having the plague. I turned down a shopping day out because I was wiped out and would have ruined it for Mum and Auntie as well – that should have probably had everyone on red alert haha 😀

GROSS PIC A BIT BELOW… YOU HAVE BEEN WARNED!!

So Sunday we had planned that I would see friends for the first time and I got Inside Friend round for food and got a proper good catch up…. THEN! I had her hiding in the kitchen because she hates feet… Was redressing Death Toe (still very dead)… and sodding big toe next to Death Toe has a sodding ulcer. Ohhhh yes. Had a poke and we have pus ladies and gents, we have pus!! This toe was previously infected last December and eventually calmed down right about the point Death Toe was born. The ulcer is the small dark hole to the top corner of the nail. This may look fairly insignificant, but not when you have had at least seven infected toes start off like this previously and one of them then decide to die, all just for shits and giggles. The pus (because you are all dying to know) oozed out of the scabby area to the right of my big toe, which is where the previous ulcer was and is clearly where the skin is still thin and damaged. It had that creepy hollow toe feeling going on as well when I got some of the gunk out 😦   But yep. I have called him Fester. Took a family photo of him next to Death Toe and baby Voldetoe. Who is still painful and unchanged and ischaemic. The only one missing is their cousin ‘stupid sore ulcery patch on side of foot guy’ who needs a catchier name :/ Please excuse how yellow naked Death Toe is. This pic was taken at a delicate moment between dressings, with one of the nurses giving him a bed bath moments later to clean off some of the iodine.

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Anyway. After seeing this and swearing my head off, I wasn’t sure quite what to do, as yes I know I am immunocompromised, but didn’t want to overreact and wasn’t sure if e.g. starting the fluclox I had in the cupboard was an ok option and then wait until the morning for emergency GP appointment. I got a few metres down the road to Fave’s, watched the first few moments of a film and in the meantime was seeking some advice to see how much I needed to overreact. Overwhelming consensus was that with me being triply immunosuppressed (rituximab, prednisolone daily for a good few months now and having had plasma exchange) that any sign of infection meant A&E time. 111 agreed and I had a bloody good weep, threw some stuff in a bag and went to A&E. Regarding the fluclox, ‘normal’ people could do this without causing any harm… But I have had so many infections and speed is a little too much of the essence for them to waste it on an inappropriate antibiotic for the type of infection AND it can mask the blood test results as well! So yes, if you are in a similar situation DON’T take any antibiotics you have at home, go and get swabbed and get blood tests so they can target it appropriately!! The only ‘nice’ thing about this entire situation and the first thought that went through the background voice in my head behind the swearing, was that it at least explained why I had been so ridiculously tired and crap. I am waiting for the rituximab to start working so I can be frolicking in the daisies and skipping to the park to host hoop festivals and glitter orgies… So feeling excessively tired and sore and it worsening and not knowing why was alarming me. At least now I know the why!!

Dad was still around and did a late night drive to take me to A&E. A&E docs agreed I was very right to have gone in… and then admitted me, eventually. They were gonna send me home with oral antibiotics as SURPRISE SURPRISE! – temp hadn’t risen and bloods didn’t show anything too exciting, but when I pointed out that the same had happened with Death Toe up until it being… Death Toe! and that I literally NEVER spike a temp, no matter how infected, the on call medical doc came and had a nosy at both toe and notes (making repeated shocked and disgusted ‘oh my gosh’ noises the whole time haha!!) and he got me admitted pretty much instantly with a load of bags of iv clindamycin planned. I was on the same ward I was on for weeks last time, for the whole of Monday from about 6am until 8pm ish and then went down to the Gynae ward (the one I was on until I was swooped away to Addenbrookes by Supermum). I have had about… eight bags of antibiotics so far and have been absolutely shattered and my toes PLURAL are sore and shitty and I am rather fed up. I have absolutely no idea how long I’m in for. Blood results don’t show anything too exciting but pretty much all of my records on file here will have been taken when I was dealing with infected digits – and having spoken to GP, apparently the results here only show what is on hospital records and not the ones on my GP records!! (Although this is apparently due to change with some fancy new electronic business being introduced…)

So I am now wondering exactly what they are looking at, as the bloods I can see on Patient Access go back to 2011 (pretty good baseline seeing as how I wasn’t ‘ill’ until 2014). My liver function results (as graphed) went slowly up and up since early summer 2016 and then absolutely rocketed up around the end of August, a few weeks before I was urgently admitted to hospital and kept in for eight weeks. Saw my normal rheumy consultant yesterday – she tracked me down and got a whole load of tests and cultures and xrays organised to check exactly what other hidden infected business is going on. Today, after being on the new ward, I saw The Three Musketeers (of previous post fame – rest of the Rheumy Team). I am personally worrying that my general blood test trends could be due to the vasculitis and not the medication, but have given up trying to raise anything like this with The Three Musketeers now and will just wait and see if I can see my specific Dr again tomorrow and if not, meh. Just die of exploding liver disease I suppose! All three – to varying extents to be fair! – were incredibly defensive and dismissive of me having gone to Addenbrookes and pooh poohed the fact that Addenbrookes hadn’t given me a diagnosis beyond undifferentiated small vessel vasculitis… The fact it was suspected CPAN and they couldn’t do the biopsy so that I didn’t bleed to death was loudly ignored… and they were also quite scathing about the fact I had an infection – ‘well that’s what comes of you being immunocompromised’ as if this was solely due to the rituximab and plasma exchange that I had when I was down there! If memory serves they had wanted to wipe me out with cyclophosphamide and I have quite clearly got an issue with these ulcers, what with it being the eighth one at least in two years! Really wish my Dr didn’t work at different clinics 😦 There is a lot to be said for having consistency at least and I know I was under a lot of stress and ill and tired etc., but I still can’t get past that day I was woken up to all three of them looming around my bed and how much bollocks one of them in particular told me about plasma exchange. I have been poking around at my blood tests too much anyway. There are many many many causes of stupid liver results; medications that could be doing it all stopped as of today (omeprazole taken off the cards!) and the fact I am itchy as hell since before xmas has been raised, loudly, several times. So if I die of itching or related exploding liver you can all happily blame my consultant. More bloods were done today so if I am still horribly deranged in a livery sense then maybe it will be time to become a complete pest and demand a liver scan…

I finally requested my hospital records in full 🙂 Sent of £10 cheque and am waiting for a horrible invoice for the paper copy haha! Will be worth it to go through and have a tidy. My GP records on Patient Access revealed that back in 2015 – without my knowledge! – I was smoking 15 cigs a day haha 😀 I may have maybe, once or twice, smoked a rolly at the weekend whilst drinking but I have never regularly smoked when not intoxicated and I honestly think I would puke at 15 😀 I sorted that out whilst on the phone, along with the lump in breast from a huge cyst I had had when I was about 11 being a ‘current issue’… and hearing loss being a current issue! It may be a teeny tiny problem, especially in right ear, but it is from being a premature baby with underdeveloped inner ear bitties and is in no way significant enough to be ‘hearing loss’ under current problems 😀 Unless you are near Dad. And then everyone has hearing loss. BECAUSE HE MUMBLES HIS WORDS VERY QUIETLY AND DOES NOT PROJECT HIS VOICE TO THE BACK SEAT OF THE CAR OR TO THE OTHER SIDE OF THE TABLE. Just sayin’…..

Anyway. Back nearer the beginning. I shat all over film night by firstly being on the phone to support group (Thanks!!!) and then 111… and then crying all over the place… and then going off to A&E. Then I’m in here the evening I was going to get to see one of my buddies who works stupidly long hours and I haven’t seen her properly for so long 😦 and was gonna spend today doing arty farty stuffs with Fave. I noticed a lot over holidays how much being tired and ill has changed the level of people and stuff I can handle. I don’t deal well with overlapping or clattery noises for example and being back in hospital, part of me wonders if that is what triggered that off so badly. The lady I was next to upstairs yesterday was… very tough. She appeared to have no short term memory basically and in the few hours before I moved downstairs must have asked me about 100 times what time it was, when someone was coming to take her to the toilet or to help her get dressed for the day or what day of the week it was. It was the evening for one thing and she was already dressed… and she had been to the loo so so many times as she had a urine infection that was making her THINK she needed to pee when she didn’t 😦 The other ladies were much quieter than my usual cohorts from last time, but she more than made up for it  >.<  I was definitely not long off pulling curtains round me and feigning severe hearing loss!!! Dad witnessed it as well which I think he found a bit tricky for some parts, as she was on top form for the half  hour he was in with the repeated questions, but she also kept referring to him as my husband – which he DID enjoy as she was spooning out the compliments about how young and handsome he was haha!!

I have had – as well as being sodding knackered – a few very weepy emotional days. Bawled my eyes out a fair bit… Started crying with frustration for example because I dropped my purse then my stick trying to get cash out, in public with a queue… Because I just couldn’t coordinate my stick, my handbag (which was a cross body shoulder thing!!) AND then get some cash out. Apparently that is all just too much cooperation to expect from my limbs and my brain :/ I need to sort that out, or practice at home haha – the same thing had happened trying to answer my mobile before Christmas and I’d started crying in anger on the pavement. Maybe I blame the bag?! It really is a weird relief knowing that it will have been partially caused by this infection, as although infection = bad, it was also not fun being so wiped out, sore, irritable and weepy and not knowing why!!

I don’t have to start work for a few weeks and will hopefully be allowed to do a phased return anyway, but am slightly concerned about when I will be allowed out of here, how many drugs, whether I have a deranged liver that will explode… So many questions!!! If I feel utterly naff still as well it will at least make it easier to have a proper think about care assessment and PIP forms and all that jazz. I am so on the fence about PIP – on a bad day I would defo qualify, but like most people I know with a disability I spend my entire life compensating, being in denial and hiding it as much as possible!  The stress from the application process and almost inevitable tribunal process (NO ONE seems to get it first time around!) is likely to make the whole thing completely counterproductive :/ Hell I am stressed even thinking about it, I can literally feel my blood pressure rising haha 😀 I had a few moopy nights anyway before realising I was infected up to the eyeballs again, just feeling a lot more disabled than normal, in the sense that I can’t drive at the moment, can’t walk very far, am in pain whether or not I use the stick but can’t manage without the stick as I feel so off-balance in case I put my foot down wrong or knock it, am so so unrelentingly tired, can’t handle lots of people and stuff, can’t deal with a job list because maybe half of one thing will be done in the whole day… Its making me sad as well realising how long this has been going on now. Christmas 2014 I already had my first infected toe, was knackered and sore and stiff all over (penis joke! Filth) and had no idea why at that point. By June 2015 I had had a few infected digital ulcers, got referred to rheumatology and started hydroxychloroquine after a few months of investigations. Christmas 2015 – guess what! Infected ulcer – in Fester! The same damned toe that has exploded this time! June 2016 – Meth and steroids! October 2016 – hospital for eight wonderful fun weeks! Christmas 2016 – The Era of Death Toe and by then it’d been about six months since I could comfortably drive longer than ten minutes or walk further than the end of the street. It has now been about a year and half since I started using a stick on a regular basis and about a year since it became my norm, even when going out on a night out. I’m absolutely shitting fed up of this shit. I’m lucky I have bloody wonderful friends or I would have been so  disgustingly depressed and isolated. Its bad enough as it is, especially the isolation side of things!! – but I have at least managed to pretend to have a social life, even though I am now essentially pretty much housebound. Once the rituximab works (trying so damned hard to think of it as ‘once’ and ‘when’ and not ‘if’!!) I am going to frolick bloody hard and make a socialising nest in the park and I will love being around crowds again and multi-tasking again and it won’t knacker me out. I will also ban infections. I will further ban Donald Trump for he is an absolute twat and although I want to find him funny, it really really isn’t funny.

On a productive note, I have taken the first steps to changing my ‘local’ consultant – from one at a nearby town about 15 mins away to one about an hour and half away. The thought being that if I have any kind of incident, I can get seen at A&E locally still and this will hopefully not be a repeated situation for the whole of 2017! It has been run past my GP on the phone (appointment was today and I am incarcerated attached to an infected digit once again woo!) and she is happy enough as long as she has the support of new doc when blood tests go funny etc. as she was very quick to admit she knows very little about my condition and didn’t want me to be relying on her (paraphrasing!). We discussed also the sense in me having an ’emergency’ A&E pack, with this admission having been the perfect example/test scenario. Me crying and the A&E Dr asking for a second opinion/someone being available to provide that, was in a sense lucky, as not every Dr knows anything about vasculitis or is willing to take what a patient is saying seriously when there is no presentation of sepsis in the initial blood tests or main symptoms… E.g. I was not confused or slurring.  felt queasy but wasn’t vomiting. If I was ‘normal’ I would have sent me home with antibiotics!!! But, that is kind of why I am losing a toe now, because my symptoms were not seen for what they were until it was too late. I would hazard a guess that it is fair to say A&E don’t actually give a crap who my Dr is if its the middle of the night at a weekend – the fact that my consultant happens to be based at this hospital is also irrelevant when she works at several different clinics during the week, a fact which was driven sharply home during my last admission and again today. So a folder confirming the main details, who to contact, the fact I don’t show a temp, the fact pred does absolutely sod all, will basically cover enough to be admitted and get cracking on with treatment wherever I am.  Its been quite a long faffy decision for me, but now that I have had a phone chat with my GP about it, I feel a lot better and just need to get it sorted out with my consultant now if I see her tomorrow. I want to discuss it in person as I think NOT doing so will just make me feel like a coward afterwards and I don’t want any bad feelings or offence taken :/

Happier times… I have still been able to talk to my friends online, even though I am incarcerated! On my friend’s nudging (following her taking advice from a David Wolfe page that thoroughly confused us Ridiculous David Wolfe page – ‘mammals don’t get arthritis!’) I have tried standing upside down naked and rubbing a yorkie chocolate bar into my ears and can confirm that this does not cure vasculitis or associated arthritis type pain. In case you were wondering. Might be because I got confused and ate the yorkie. See Exposing Nutritional Quackery – facebook for more fun 😀

To reintroduce a snippet of everyone’s fave feature from my last lengthy hospitalisation, lets have a dose of Ward Life!

First, it is with an incredibly heavy heart that I have to report that J from previous posts, best ‘waving across the ward bay’ friend of my great great Auntie, owner of the imaginary fish stall, the lady continually wanting to break out of jail and involving me in all her break-out schemes, has sadly died 😦 She made my stay in hospital much more cheerful and we had several very lovely – if very strange – chats together.

I am now back in a bay with three other ladies – very spacious and calm down here compared to upstairs! – and of these three, only one is proving to be testing or ‘interesting’. The other two are chattery and although unwell and in one instance, in a lot of pain, not too miserable or grumpy. The other lady… Oh my 😀 She has quite some self-importance about her as well as a distinc lack of knowledge about reality – and really really likes telling us all off!! Including the nurses 😀 I dropped my stick last night and by then was so scared of her I froze, like someone in the presence of a hungry T-Rex, only to hear her saying quite angrily “People frittering about at all hours, well I hope they all die” – WHAAAAAT??? She talks in her sleep as well and some of what she comes out with is very dark and sinister. She doesn’t like the lights being turned off, goes ballistic if anyone else gets a cup of tea or food before her and before she asked me to help her sit up so she could go to the toilet – which I am not supposed to do, being a patient AND would find difficult to do as I can barely sit up myself! – and I was so scared that she would start yelling at me hehe – I was sweet-talking her for the few mins it took for someone answer my buzzer and thankfully I managed to get away with my incompetence. Discussing food helped I believe, I panicked, it was likely all food related conversation 😀 Once again though, like the lady upstairs I was next to, she doesn’t seem to acknowledge the existence of her buzzer! It is all very well them having one, but if they don’t want to use it or don’t remember they have it or what it is for… Then yep. Trying to stand up themselves or just literally yelling at everyone in earshot until their goal is accomplished seems to work! I saw another fall though yesterday 😦 Which was a good reminder for me not to get complacent and assume that someone who is trying to do something, SHOULD be doing something!

Right. Blogging over with for now. Taken ages again to type up what I wanted. It is bloody hard when you keep falling asleep at weird hours or have parents to talk to! 😀

Tomorrow if I am still in hospital, time for a film maybe. Eyes clearly allergic to the hospital as eyesight has gone naff again. Or its the…. Erm… No, none of my drugs have changed!!! Could be generally how I react to being ill?? Stupid drugs. I think my new game for 2017 is ‘drugs or disease?’ – all the cool kids are playing it!

***OK – I HONESTLY SHIT YOU NOT, SCARY LADY JUST MUMBLED AND THEN VERY VERY CLEARLY SAID “KILL KATH” IN HER SLEEP!!! AND THEN MADE A NOISE THAT WAS MAYBE EITHER A FART OR A BURP BUT SOUNDED LIKE THE ROAR OF A POSSESSED DEMON… I REALLY REALLY MAY BE DEAD BY THE TIME YOU ALL WAKE UP… I LOVE SOME OF YOU LOTS, SOME OF YOU A BIT AND A FEW OF YOU I WANT TO PUNCH FACIALLY. HAH YOU ALL THOUGHT I WAS NICE! OH AND I STILL WANT TURNING INTO A GLITTERY GLITTER BALL BOMB***

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

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

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

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

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

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

 

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

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

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

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

#Iamstartingtowonderiftheyevenlovemeiftheycan’tbebotheredwiththepresentsIgotthem

#notsosureIamverygoodathashtags

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