Kath gets up close and personal with the sofa; being home is exhausting and being ill is both very frustrating and incredibly complicated to organise. ***Lots of sweary ranting… and a beautiful pic of Death Toe remnants***

I haven’t really been getting the urge to do an update because I’ve been rather busy doing… Not a lot… What follows is a rather epic rant, so many of you may not really be too arsed about reading this, but frankly I am rather furious at the world, and my options are vent in writing or break things and I am not strong enough to break much more than a tissue at the moment 😀

I got home – e.g. back down from Scotland, from my parents’ house, a wee while back. End of Feb to be exact! Since then, I have had… Seven Doctors appointments in eight days. Two dressing checks, a GP appointment, full bloods for cyclophosphamide monitoring (which amounted to many many vials, including INR) and another three appointments solely for INR bloods. It is insanely confusing trying to remember all of these, even when they are all written down in my diary religiously. Which may sound ridiculous, but please remember I am utterly shattered and have for about six months been in hospital sticking my arm out at least once every four hours for a blood sucker or cannula or someone taking my bp. So when I cancelled an appointment a while ago WITH A FEW DAYS NOTICE – not even the one I thought I was in trouble for missing earlier on when all this was “kicking off” (my definition of kicking off has become decidedly more medical haha) – and added a note on the system saying ‘still in Scotland, INR test being done here’, I didn’t realise it was another strike against me at the local GP centre, as it was apparently a VERY IMPORTANT APPOINTMENT where you get set up on the stupid special INR system.

The other strikes against me having been because of the first time I was taken off the warfarin (in December) because I needed an operation to remove the hickmans line and my old genius Doctor (so much sarcasm. So so so much) had started me on warfarin a week beforehand: STRIKE ONE. Next, due to begin warfarin again in the New Year and got taken into hospital – urgent admission through A&E, cancelled online with a few days notice: STRIKE TWO. The next time it was discussed, I was flatly told that the local GP practice refused to monitor me and it had to be done at the hospital. Then the hospital said they wanted epic amounts of detail about my condition and why I was to be started on it and yadah yadah. A letter from my consultants at Addenbrookes was not deemed sufficient… So there was much bickering ongoing to sort this out and in the meantime, I was admitted urgently again and sent up to Carlisle… and my new genius Doctor (no sarcasm) was kind enough to finally get me cracking on the anti-coagulation juice in mid-Feb.

This went perfectly dandy, including me being tested to death and monitored in Scotland, until I got STRIKE THREE which was missing this VERY IMPORTANT APPOINTMENT. So I have had all these millions of blood tests in the past eight days and no one has actually been in charge of monitoring me. My GP is actually very wonderful and has essentially arm-twisted the practice nurses, who are all also individually wonderful, into setting me up on the system, probably helped by the fact they have been taking my bloods for the past few days and were seeing me attending appointments and diligently filling in my stupid twatting yellow book. I now have been told I have a new VERY IMPORTANT APPOINTMENT and that I absolutely cannot miss it as it is the last one available this month and if I miss it I have to go to CARLISLE!! to get set up on their INR twatting system and have all my blood tests sent up there… WHAAAAT??????? [To clarify, I am the one keeping track of the strikes… No one has actually bollocked me using the word ‘strike’ for a while, but I am aware fully of the incidents they are remembering and feel very aggrieved!!!]

Bahhhh. I have a trip back up north planned soon for Mother dearest’s birthday and it has basically turned the travelling for that into a bit of a complicated git, needing to be back down and rearranging all of the stuff I had arranged already with the GP practice in Scotland. My diary is disorganised chaos and everyone thinks I am horribly unorganised (I just googled the difference: DISorganised means thrown into disorder and UNorganised means not organised!!). I am in a shitty mood about it all and had an angry cry in the middle of a shop haha – Ooo! I actually saw humans – in real life – in the town!!!! For the first time since SEPTEMBER! – I drove, although admittedly literally two minutes – and went and did adult things like the Co-op for a bottle of milk and Costa for a chai latte (mmmmmm) with a friend I haven’t seen in months. It was lovely and the stupid INR crap has dimmed its brilliance 😦 Also starting to get fretty about Friday as I have the formal meeting reconvenement at work and I have to drive or pay £20 for taxis – that is basically the main reason for wanting to get a practice drive in today (and likely a slightly longer one tomorrow). It is a stupid mix of being happy for a chance to see my work colleagues and being upset about the whole being off work and formal meetings and having to essentially have yet another aspect of my life crapped on by being ill.

Being home has been nice for having my own bed back… and seeing my fish!! My shrimp is a handsome little dude. Most importantly, seeing my friends. I have had only a few weeks at the most since September actually being in my own house, as most of the recuperation time when I haven’t been in hospital (maybe five weeks in five months?!) has been spent up in Scotland! When not in the twatting GP surgery getting blood sucked out of me, I have been either sleeping or taking drugs. In the middle of all this I have finally managed to get some catch-up time in, including Giant Hound time 😀 I also (against the strong hintings of both Mother dearest and the accompanying friends…) went to the Vasculitis UK symposium in Manchester last weekend. This was amazing, partly for things like seeing that cars still existed – and tall buildings always excite me, as I am a country bumpkin 😉 But the singing in the car – mmmm! – and the hotel room with the giant tv and the kettle!!!

I managed the whole Saturday conference part, with some pretty informative and emotional presentations. I cried quite a lot and I wasn’t the only one. Meeting people I have been talking to online for so long was incredible and it was also a very useful chance to learn more about other people’s experiences and types of vasculitis. It covers so so much – essentially any blood vessel network in the body can be affected; lungs, heart, brain, skin, kidneys… Some very inspiring and motivational stories, particularly from the youngsters that shared their experiences. I didn’t manage the ball in the evening: I got all dressed up with Inside Friend and Fave, who had accompanied me and were equally as giddy about hotel room shenanigans 😉 and we ate a magnificent feast with a bit of serenading, and then I crashed and was asleep within about half an hour 😀 I did manage to get my pjs on and brush my teeth though 😉

*****UP CLOSE PICTURE BELOW OF WHAT AN AMPUTATED TOE GAP LOOKS LIKE – NOT AS GORY AS YOU WILL BE EXPECTING AND HE HAS A SMILEY FACE WHICH MAY AMUSE YOU, BUT STILL CONSIDER YOURSELF WARNED*****

As much as the pain I am dealing with day to day is so much less due to Death Toe being a goner, I am now having to deal with the rest of the condition being noticeable again, which has remained largely unchanged for over two years now. I first was aware of being unwell in December 2014 and that is about when my toes started to try and die. I have had daily joint pain, muscle aches, fatigue and brain fog since then, although to a certain extent it wasn’t so bad that it was impacting my day to day life and mobility until early 2015. So yes, Death Toe is gone. Speaking of, he has been replaced by Kevin Spacey (as named by Dad), who looks suspiciously like a vampire smiley face… Apologies for how close up Kevin is. I can’t make it any smaller and wordpress is not being cooperative. Kevin has at least healed well. Basically the only thing that has gone as planned in the last two years was that amputation!! The biopsy I had two days later… Not so well. Still a huge gaping wound in my hip and still requiring dressings and getting suspicious glares from the practice nurses, a month after being gouged at. Being ill is super fabulous in case anyone had missed the hinting earlier.

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Now Voldetoe has taken over as being a painful twat that is threatening to be infected. I remain off work six months on, on the advice of my Doctor, as I need yet more toxic crap thrown at me and get to start new drugs with new exciting potential side effects. Woopee. This is a very grumpy post. Kath is in a shitty mood. I am very chuffed to not be in hospital and to have my friends close to hand, but really… I am minus a toe and have precious little going for me day to day at present except taking drugs at regular intervals and attending appointment for people to suck my blood and get told off/sanctioned/isolated from society and have my stupid hair falling out at a stupid twatty rate, all for being medically weird.

Regarding hair falling out, one of my fabulous friends came and lopped about 50% of the remainder off for me a few days ago, as when it is long and straggly and falling out in handfuls it is even more depressing than short and falling out in handfuls. I thought I would be bawling my eyes out, but having a few of my buddies round making me giggle and making moustache faces on the floor with the choppings was sufficiently distracting and I managed the whole event without howling. Yes, I have a huge amount of hair left, but trust me when I say I am having handfuls coming out each day. Anyone who wants to get offended about me discussing this, because I have fabulously thick hair still and shouldn’t be complaining – or who thinks chemo is just for cancer – can come round and I will cram my moultings down their ignorant necks. Oooo agressive angry Kath !! I’ve dropped to 9mg of pred this week, I should be getting progressively more sweet-tempered – how confusing!!! 😀 Also about to get more toxic sludge in the next few weeks, although as not cyclophosphamide, not AS bad on the hair fally-outty front… But I am still only about six weeks from dose ONE and it says three to six weeks for hair loss to START on all the cancer websites 😦 Mine began after about ten days!!!

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I also get to go up to Carlisle again soon and get incarcerated for more rituximab because I got that nasty itchy rash all over me last time and may have an even more exciting reaction this time… At least Death Toe gave me a very specific focus for the hatred and the anger. Now I am hating Voldetoe; everyone is welcome to jump on board the hating-wagon.

Ahhh – the good news? I get pumped full of chemo drugs that are very likely to have made it impossible for me to ever get pregnant safely – and what happens? My shitting periods have started again, after taking a few months off and worrying the crap out of me. Thanks body. Very sensitive timing.

#rarediseaseday challenge – Day 28: RARE DISEASE DAY!

#rarediseaseday challenge – Day 28: RARE DISEASE DAY!

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

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

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

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

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

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

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

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

justgiving – Connor & Co. running for Vasculitis UK

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…

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!

 

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

Toetally Awesome – JustGiving page

 

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

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

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

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

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

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

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

Right!

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

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

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

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

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

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

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

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

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

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

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

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

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

Death Toe is getting the chop 😀

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

 

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!!!