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 😀

20170105_011227.jpg

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  😀

fb_img_1483459740758

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 😀

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

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

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

facebook_1482881933266

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

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

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

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

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

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

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

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

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

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

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

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

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

1480362417608

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

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

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

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

Death Toe’s first AND LAST Christmas!!

I got a little excited last night about Christmas and as a result stayed up till about 3am (as you do).  I am blaming the pred – such a common excuse!!! – but I am also aware that a LOT of people on the support group were awake as well, so yep I think its a valid one 😉 Santa snuck in at about midnight whilst I was peeing and left a stocking on my bed and buggered off to sleep… Or wherever. How would I know. He is Santa… But this meant BECAUSE NO ONE WOKE ME UP, I got up at 1pm… Which meant a breakfast of pork pie slice to take drugs with and then being a weird pathetic kind of sous chef with the rest of the fams yelling at me to get my toe out of the way every time I set foot or feet on the kitchen floor!! I made scones yesterday. I’m not COMPLETELY banned from the kitchen!!

Mum and I have been on the cups of tea all day and the boys (broo and Dad) and Mog (our cat that kinda thinks she is a dog) have been boozing gently allll day.

20161225_175325

We did the usual traditional turkey roast and sort of accidentally factored in the missing brother in terms of volume – last year big broo ate nearly as much as the rest of us put together. Yes, I am prone to exaggeration A LOT, but he honestly ate so much it was scaring me. So this year there is quite a bit of food left and we will be eating turkey/veggies/stuffing sandwiches for a few days 😀 I still reckon if we put it all in a pot and blitzed it with some gravy it would be an amazing soup, but no one seems keen to try it yet.  The best bit of Christmas dinner this year was managing to get away without eating the two sprouts Mum put on my plate hahahaha FOILED YOU MOTHER!!! Also, the toasts we did. Big broo got one, parents did some nice ones about health and happiness etc… I was getting told off as all of mine were slightly more… Negative 😀 They involved a lot of addendums and sub-clauses… Such as “To Death Toe. May he piss off really soon. But not too soon. And not in a painful manner. And not leaving a mess behind him. Preferably not getting infected or damaged any further before he falls off…” Apparently you also aren’t allowed to wish anyone a lingering death so they quit their job :O I had to amend that one several times as well before it was allowed to stand :/ Spoil sports!

After Xmas din dins, we did a concerted effort on the pressies – I got some awesome bits for my house when it one day gets habitable and I can move in – including a rug I have been lusting after for a looooong time 😀 It is so super colourful!! The plan with the house has been from day one to have it very neutrally decorated, so that I can vomit colour and uncoordinated crap alll over it. Plants as well. It is going to be a kind of multi-coloured shiny jungle 😛 Mum shudders every time I expand further on my plans to her 😀

20161225_172756

See also spotty bag and patchworky bag 😀 I did well. I must have been good at some point last year… >.< I also landed myself the below, with the plan I think being that I am supposed to use the empty jar to keep Death Toe in when he finally fecks off my foot 😀 Nice….

20161225_172736

The vast vast majority of the day has been spent in nanoblock heaven – I got one for myself, one for little broo and one each for Mum and Dad – matching minions, Kevin and Dave for them!

20161225_174724

Little broo got a rather intense pirate ship – it is a difficulty level five and he has been doing it so far for… six and half hours non-stop haha that is amazing 😀 It isn’t finished… I would estimate he is about two thirds done. I lie – he had about a 40 minute break at one stage. We went through for parent bonding and watched the animation of ‘We’re going on a bear hunt’ – one of my Dad’s all time fave books 😉 I struggled from the first minute. A lot of very dangerous business going on in that short film. Babies crawling all over dogs. Parents leaving children unattended for hours. The children buggering off outside in a weird world where the weather changes every five minutes and THE BABY DIDN’T HAVE A HAT ON – a particular bug-bear of mine. And speaking of bears, there was a bloody bear and the film shows the girl giving it a sandwich!!! That is hardly sending a good message to young viewers!! I do not watch tv much and as a few of my friends are aware, when I do, I particularly love arguing with it… This brought out the very worst in me 😀

20161225_174846

I got myself one (partly as I knew little broo would take it very seriously haha) and ooo yeh I found a unicorn 😛 It was awesome – very very very addictive, I have definitely found a new sad git hobby!!! – weather aside: bloody hellfire it is WINDY HERE :O – actually a bit fearful. Yes the house has stood for many centuries in various forms, but what if tonight is the night it flattens me and the cat?? Apparently we have mild snow warnings (unlikely) and JUST into gale force winds outside. Sounds like a flippin hurricane the last few mins!! – so yep. I made the unicorn and it is amazing and I am getting various name suggestions, many of them very rude and I think I am going with Keith 😛

I was surprised at how much fun it was, you don’t really need tweezers but I have shaky fingers and delicate finger ends to contend with so they helped for the small fiddliest bits! The instructions were also manageable – so the unicorn was a level two difficulty hehe and it took me a good wee while, so I reckon little broo will be on his pirate ship for a while!

One of the most awesome things about being back up in Scotland is always seeing Mog. She doesn’t like me anything like as much as she likes my brothers – her fave is bigger broo, but he is away, so she is making do with little broo and snuggled up next to him on the cushion that she is not allowed on – SNITCH WITH PHOTO EVIDENCE!!!! – for many of his nanoblocking hours, just occasionally swiping at him to make sure he remembered she is a cold hard killer… That is how she expresses her love. Also get to use comb-on-a-stick – a long standing member of the family, used out of necessity as she absolutely LOVES getting combed, runs over to you when you tap it on the floor, but then decides every few minutes to go insane and try to eat you mid-combing!

She also flatly refused to have a selfie taken. It was a very painful process involving crawling around on a slate floor, which I shouldn’t really be doing – and the majority of the pictures had me looking like some kind of insane stalker. If either of my brothers had tried this, she would have sat beautifully and done tricks on command. Little shit.

Yes, I am a nut case 😀 Note also the very fluffy new hood. Fave will approve when she sees it 😉 So I think little broo is sodding off tomorrow to go play poker… I am just gonna bimble around trying not to eat too much of Mum’s cheesecake… I am flaring a bit weirdly at the moment and all of my mottling is on fire – I have very cool spiderwebby purple patterns all down my arms, middle of my back… Back of my hands, which always look kinda mottled, but especially so last few days! Been sleeping in mittens etc. and waking up warm, so not too sure why :/ Meh. Liver is deranged so probably just a side effect of that huh! Until they get some kind of epic biopsy to check if it is maybe CPAN, I will just stay at ‘weird undifferentiated small vessel vasculitis with some kind of coagulation problem as well’ forever. Not sure how they are gonna do a biopsy as well with me back on warfarin after Xmas, if they can’t even remove a tunnel line with me anti-coagulated… [oooo gotta go inject myself, thank you brain, good remembering!!] Which reminds me, I got cranberry body shop goodies as well, which I thought was Mum’s idea of a giggle, as I am guessing at the time of purchase I would have not been allowed any cranberry to EAT because of the warfarin, but as it is I currently can (until the 10th!) and I had LOTS with turkey today 😀 I currently smell very good. Just doing a cheeky nanoblock shop… They are so addictive. Don’t start……!!!! Merry Xmas to everyone, hope Santa was good to y’all!

DEATH TOE WILL NEVER HAVE ANOTHER CHRISTMAS MWOHAHAHA!!!

****WARNING – updated Death Toe pics for a festive treat – baby Death Toe also featured :D**** Frequent flyer! Rituximadoodah Day… (featuring GET THIS BLOODY LINE OUT OF ME!!! – also starring Goodbye Hendricks III!) Helloooooo Christmas with the fams! :D

Since last posting, I’ve had a long, long few weeks of repeated GP appointments for Death Toe, going through my drugs several times to make sure I had everything ordered before Christmas holidays (my normal level of brain fog plus drug importance plus Christmas excitement has made this an epic task!!), working out exactly how weak and feeble I am – and going in and out of the hospital FOUR TIMES!!! That is just LUDICROUS!

Initially it was for a rheumy review for bloods as a pre-check for the rituximab, as mentioned last post. This was on Tuesday 13th… and flagged – for the first time ever that I am aware of – slightly dodgy liver bloods. I had raised ALT levels – ‘elevated liver enzymes’. I have a deranged liver 😛 A little confusingly (both initially for myself at the dawn of blood testing and now for anyone I have mentioned it to (“…have to lay off the sauce then won’t you!”)), this doesn’t mean liver function is impaired, it is more a reflection of generally high levels of muscle damage or inflammation.This could tie in I suppose with how much more stiff and sore I have felt lately – pretty much the worst overall in the last 18 months at least, especially when you factor in the difference the morphine must be making! If this IS the case, amusing (to me anyway!) then it has taken TWO YEARS to finally show up – although I gather that this may actually be fairly normal for bloods to take a whole long time to reflect autoimmune diseases properly for some peeps! The other thought is that this is caused by the medications I am on, because of when it started to show coinciding with two changes to my meds… Omeprazole (tummy protectors increased for the bad silent reflux) and the co-trimoxazole I started after dose one of the rituximab, just before I was discharged from hospital.

SO, the co-trimoxazole was stopped asap, with the plan being that if this didn’t work I would stop the omeprazole next. I then went in that Thursday to get dose TWO! This day got dubbed Rituximadoodahhh Day 😀 For this I went into the Oncology Day unit, a really comfy lovely day ward. The staff are ace, the seats are super comfy… They had footrests lying around…  They re-did all my bloods again and worked out my Gamma GT levels are dodgy as well – basically more liver function business. My tunnel line (Hendricks III) got a serious flush and re-dressed – it needed it, as it had only had me paying it any attention in just over two weeks! TOO LONG!! I got my pre-meds through the line then; another (thankfully much smaller) dose of the devil that made my feet go huge last time (methylpred) and some piriton… These are standard protocol and were just to make sure I didn’t have any kind of serious reaction to the ritux. I was sitting for a good wee while waiting to hear if I was going to get the go-ahead for the ritux despite those liver tests (it got run past Addenbrookes just in case) and I was chirping for joy when I got the thumbs up 😀

fb_img_1482135681691

I had a proper little stash of goodies in with me for the day – knitting, a book that I still haven’t managed to start – just can’t handle reading still for nearing on three months for some reason :/ Proper cute little new bag for my knitting that one of the lassies got me for me birthday 😀 Finished off my phone cosy that day with some button goodness – chuffed about having mastered moss stitch!!!

20161215_112404

Last time I had the good stuff, I was discharged the next day and was in a head-spin of giddiness and still recovering from the methylpred and plasma exchange as well… This time, I was knackered and sore and stiff – but not really much more so than normal for me right now! It feels very strange to be so delighted about receiving a drug that is basically poisoning me :/ It essentially destroys a good part of my immune system so I can’t attack myself and having now had dose two, it is to be hoped that by…. the end of Feb definitely, I should be feeling significantly better and HOPEFULLY a lot less digital ischaemia going on… That is the new scary thing. When I started going downhill during my time in hospital, the bit that has remained consistently worse aside from joint and muscle pain, is my stupid bloody fingers. Apart from pinkies and thumbs, all of them on both hands are trying to emulate Death Toe and have CRAP circulation. This is meaning not only shitty capillary refill, but the appearance of tiny little ulcers and bits of damage from NOTHING – invisible papercut type damage that you only realise is there when you TOUCH A LEMON 😦 Or even just put your hand under a tap :/

20161213_094040

The above is absolutely standard now on six of my fingers. It is scaring me, as this is basically how all of the previous six or so digital ulcers have started off; with ischaemic areas, slowly forming ulcers that then get infected.

***UPDATED DEATH TOE PIC BELOW – AND A BABY DEATH TOE PIC!***

I found the below the other day, of Death Toe back in August 😦 It actually made me cry, at this point I was still very naively believing that inadine dressings were enough and not realising quite how out of control the underlying disease was getting. Folks – meet baby Death Toe!!! From this, to absolutely destroyed and no going back within the space of less than three months. Playing the blame game is useless but it is very hard not to when I look at this.

fb_img_1482285074059

So yep, this is basically all ‘looking good’ – as weird as that is to say something so gross looks good… As long as it isn’t infected at this stage I basically have to just suck it up and be delighted.  The demarcation line is healthy and neat, there is no sign of infection… I have been given very clear instructions on how to look after Death Toe over xmas as well; I have a huge bag of bits out of the dressing cupboard I was so envious of!! Gloves, gauzes… Simplicity is the key at the moment with the dressings, it is literally a case of a very gentle wipe to remove excess inadine and any ooze, fresh strip of inadine round the whole of the dead area to keep it super dry and then some awesome foamy padding stuff to keep it comfy. I registered as a temporary resident today (in Scotland) at the local GP, so that at the slightest sign of any infection (which I would think I am pretty good at spotting by now…) I can go straight in and get the little git checked over. The space on the form for details of recent admissions, conditions and any current medication was only tiny, which I found hilarious and under advisement have emailed them the whole sordid story, so they know what to do with me if I am found in a Scottish ditch!!

Day three of hospital fun times was the removal of my Hickman line, planned for the following Friday (16th) after the ritux – in between I just had days and days of GP visits for toe dressings and picking up prescriptions. Honestly think there was ONE day that I wasn’t doing something medical. So I went in on Friday… and because of having started the warfarin, my INR level was just too high already, only four full days after starting it! I was a bit cheesed that this wasn’t thought about before me going in (£20 quid there and back for a taxi…) and getting blood tests etc., but basically because I was on warfarin AND fragmin injections still – double anti-coagulation! – my blood was too runny for them to want to do any kind of surgery. I spent a big chunk of the day in the hospital with the upshot being I was sent home and had to stop the warfarin and fragmin asap, and had a little dose of vitamin K on the way out to speed up the clotting! Good news is, because I need the initial INR start up appointment again now to restart the warfarin, it’ll be after Christmas now… So I can have cranberry sauce with my turkey YEAHHHHHH!!! To celebrate with me, listen to my FAVE Christmas song 😛

I have been listening to something a little more classy as well over last week 😉 For anyone who is a fan of Neil Gaiman, or the film Stardust – or who likes audiobooks or radio dramatisations at all, the following is so lovely!! I really liked the film for its storyline, but was always put off by Claire Danes (had never forgiven her for being such a wet fish in Baz Lurhmann’s Romeo + Juliet) AND by Charlie Cox’s fringe. This radio version is just pure loveliness 🙂 Stardust – Radio Version – AWESOME

I went back in Monday, after a weekend of lots of leafy green veggies to get my blood all sludged up again and… I absolutely bossed it! Or at least, the surgical team did… I went in disgustingly early so they could do my INR bloods again and get bumped in first on the table if it was within an acceptable range and yes, I was clotting enough. Had a bit of a pickle getting bloods taken again – I have awfully fed-up veins as mentioned before from weeks and weeks of hospital, AND I have a blood vessel condition AND I have thick sludge blood!! A very lovely and well-meaning nurse accidentally made a bit of a mess of a desperate attempt to get blood out of my inside wrist, with a whopper of a bruise that was getting more exciting daily for a while! This isn’t a standard blood draw place obviously, but sometimes after six or so tries both the nurses and I get desperate!!

20161222_150301

One of my friends, the vampires, ended up coming to get some blood out of me – being an expert blood sucker, she nailed it first time, opting for the knuckle – again not standard first pick, but seems to work very well for me, despite awful circulation to my hands – go figure!!

20161219_081546

They did full exciting surgery prep – on a table, in a gown, draped, nurses counting the instruments ten times… There was a MASSIVE light above me and it was like having the sun turned on half a metre from your face 😀 Also reckon it would kill you if it suddenly fell and I may have spent quite a lot of time doing a daydream about that scenario and how they would handle the notes… 😛 The Dr doing the (very minor) op said it looks a lot different to the ones they use, because it was put in at Addenbrookes, but despite some initial grumblings, it came out in under 5 seconds, in what I am referring to as ‘the snip and whip’ in the hope that it catches on 😀 It was kinda neat – I had some local anaesthetic, which nips a little bit when you are injected, but then couldn’t feel anything, except when it was actually coming out, I could feel the weirdest slithering pulling sensation 😀 I had one interesting heart blippy moment but it was after the line came out, where I basically missed a few beats for no real reason. That was very weird, because I was plugged into the monitor and had been subconsciously using the beeping of my heartbeat to keep myself calm… and then it was quiet and I was lying there thinking…. ‘erm…. beep????’ 😀 Anyway, no one was overly worried, so possibly it was just how hard they were pressing on me to stop the bleeding that made my heart grumpy for a few beats! Technical medical reasoning. Oh and – yes, the tip has been sent away to check for infection, they said that is absolutely standard protocol and no one has hunted me down yet to throw antibiotics at me. All in all, it was very interesting see the whole pre-surgery procedure outside of a House episode 😄 They count all the equipment sooo many times!! – and in terms of surgeries you could possibly have done, I reckon it must be the easiest and most straight forward and I sincerely hope I don’t ever have to experience anything to tarnish the treasured experience 😉 So that was bye bye Hickmans line – Hendricks III is no longer sticking out of my chest and I can now wash my own hair again 🙂  🙂

My family came down the very next day – or a chunk – one brother is still swanning round South America, staying in some crazy looking backpacker lodge with a POOL and something like 19 other folk for Christmas Day 😀 He said they are doing a proper Christmas dinner regardless. Very good to see littlest sprog though; it has been many months and he has some good stories from his three months! [Ooo have just moved to the kitchen, woodburner has done a much BETTER job at keeping it warm in here 😀 ] Had a day or two of last min packing and a lot of my lovely wimmins dropped round to say toodles before I headed up northwards 🙂 They are awesome. Got to say bye to massive hairy dog as well. I love her!!

Also got Christmas wrapping finished – above is the glitteriest paper ever, reused after receiving the above BEAUTIFUL watercolour from ma Fave – had commissioned her to do it after seeing a doodle ages ago and I got it for a surprise xmas pressie 😀 It nicely finishes off the series of three I had planned. The wrapping paper should also be framed I reckon 😉

Classic Kath-aside: A moment of appreciation please for ‘Peter and Jane’ on facebook – its a blog style page, a teensy weensy bit rude and provides pretty much continual lols! I only recently discovered this and it’s certainly one of the funnier pages I’ve ever found 😄 Peter & Jane facebook page – much hilarity! Lots of Christmas scenarios I am sure a few of us can relate to, much mention of cheese and wine (at least in recent posts haha!) and the comments are usually on form as well (as per highest rated…)!

Anyhoo. I am home now, back up in the northern stronghold, with Mum, Dad and baby broo – and the CAT!! I had nearly forgotten what a noisy little shit she is 😀 She just meows at you continually, in a very conversational kind of way. She is also amazing at playing football with you and I have given her her present of four jingly bouncy ball type things early, as she basically bats them around the kitchen floor very happily for ages, so long as someone kicks it back EXACTLY to her paws.

The only slightly sad bit about the last few days, has been that I have been a horrible little brat. It isn’t so much me being tired. As anyone on pred or with autoimmune things may well relate to, my tiredness comes very suddenly – ‘the floop’ – and I just crash. Until then though, I have pretty tragic insomnia. Having to suddenly tie in with family routine and plans at my house down south, when everyone is getting things ready for xmas was weird and I didn’t deal with it very well, after having just really got used to having hours and hours to myself again. ONE OF US *cough broo cough* had seriously bad jet-lag and was being all sleepy and non-urgent about life and all of those three were also spending serious hours doing work on my new house for me… So there was quite a bit of guilt at play, as well as knowing I had a lot to do and not a lot of time to do it and worrying about how to make sure they knew how much time and effort it was all going to take/taking – e.g. cleaning the fish tank one eve nearly ended me!! When you look at it in comparison, day-to-day I generally do NOTHING physical to be making me so tired and to be in such a shit mood, UNTIL you count the urgent business of letting the rituximab poison my immune system, as my immune system in turn tries desperately to kill my circulation system!! 😀 It just gets massively depressing being feeble and useless and crap all the time :/

I had a few things to do at the Docs, such as a final liver profile test, for which I got the results back today – a little better, but still not great at all :/ so have to get done again once I go back down. Worrying about this, my fingers, whether or not they would get my injection prescription done in time [they did!] and then if they would have the injections in the pharmacy [they didn’t!]… We went hunting for them in town and NOWHERE had them, so had to get prescription faxed to pharmacy here [Scotland] to be delivered and picked up this morning! [Did NOT miss injecting myself, the bruises were only just going 😦 ] But yep – I was being wheelchaired around town by my Mum and broo, which was fun and I got to see human beings and market shops etc, but it was for some reason stupidly exhausting – to the point where trying to handle getting my phone out of my bag, stay supporting myself on my stick and wanting to keep up with Mum for the final bit back to the house was too much for my body and my brain to handle and I had a grumpy sore cry in the middle of the street!! As Fave pointed out, being in a wheelchair doesn’t save you from the mental tired side of dealing with PEOPLE and STUFF and you also get a LOT colder, which for me is bad bad news, as my circulation is already naff and the cold makes all my joints and muscles much more painful – which I had kind of forgotten would happen in a wheelchair!!  – as well as making my fingers try to die a lot faster!  My nose has also started getting – and staying – very cold – what if my nose goes ischaemic and necrotic and dies? 😦  Stupid nose!!

I quite easily and all too often forget how ill I am. Which sounds weird, but I was actually sitting in hospital quite a lot asking my visitors or the staff to confirm that I was really rather ill 😀 I had spent the past two years – to the month really (it being the third Christmas now with some level of toe death happening according to Facebook flashbacks!) – trying to just crack on with life as much as I could. Needing a stick was a bit of a bummer, but I just adapted how I did the pub and gigs – having naps beforehand, factoring in more time to get there… Then I began working from home and reduced my hours… Started getting food deliveries… It was only this summer I started going downhill pretty fast and even then I was in quite epic denial, until probably about the point my toe exploded with guck a few days after being admitted! A fond memory 😉

So Fave sent me the left as a much required reminder to stop being a twit and remember that I am actually allowed to feel crap with all of the drugs and the hospital and the disease in general 😉 Think I will pass on the spending time outside bit though  – it is disgusting out there!! The cartoon on the right is just lovely 😀

Right. Xmas eve tomorrow! (It is technically already tomorrow, but I am ignoring that fact!) That means American style pancakes, bacon and maple syrup for brunch – a weird tradition we started at a cafe one year, when Dad had emergency present shopping to do on Xmas eve (as Dads all round the country commonly do) – and we all loved it. Mum subsequently nailed down the perfect pancake recipe and we have done it every Xmas eve for the last few years!! Gonna go sleep to make sure I am hungry enough to do it justice 😀

Being home is fab :)

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

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

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

Herval looks amazing in a scarf by the way…

15409944_10154899126457932_559857826_o

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

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

20161210_152451

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

15387348_10154899125482932_983659141_o

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

silly-tree

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

xmas-nan

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

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

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

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

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

15491580_10154899126102932_1700785892_o

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

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

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

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

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

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

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

I’M FREEEEEEE!!! 😄

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

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

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

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

EDIT: Went with Herval 😉

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

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

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

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

fb_img_1480592200295

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

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

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

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

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

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

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

img-20161201-wa0002

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

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

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

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

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

————————————————————————–

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

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

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

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

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

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

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

———————————————————————

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

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

20161202_115939

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

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

THE GREAT ESCAPE!!!

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

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

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

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

20161204_034515

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

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

Happy Kath!!!

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

Bringer of dreams…

 

 

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

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

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

20161125_162415

20161120_093538

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

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

20161126_123221

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

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

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

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

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

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

20161128_191722

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

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

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

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

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

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

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

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

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

screenshot_2016-11-27-23-00-04-1

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

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

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

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

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

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

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

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

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

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

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

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

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

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

…and breathe!

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

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

20161129_014624

 

 

 

 

 

 

 

Wed & Thurs of Week 7: Cracking on with some serious treatments! (Days 45 & 46)

So my last post was a bit of a lengthy tome… This one only covers two days, but I am feeling waffly and self-indulgent haha! To switch it around a bit from my usual order of newsworthy items, in terms of ward life nothing too dramatic has happened, except some changes in the occupants!

The lady I previously mentioned who I THOUGHT was possibly hallucinating cats… Turns out, yes she was. I had previously spoken to her cousin a few times, either whilst calling him and passing the phone over to her or in person when he came to visit one day. She had a very bad night Tuesday night and woke up several times confused and loudly calling out, demanding that the lights be turned on. This being at 2am, 3am etc in a room of sleeping women. Problem is, she didn’t really know where she was and wasn’t able to remember to use her buzzer and by the time I got to her on the two occasions she woke me up before a nurse came, she was already partly out of bed – fall risk!!!!! SO I was essentially quietly pleading with her to remain in bed, calming her down, telling her why the lights were off, using her buzzer to get a nurse in asap and also trying not to wake everyone else up – kind of pointless when she was yelling 😀 She was clearly not too well that night and then got sick quite suddenly on Wednesday and I also noticed that she started hallucinating cats walking around the bay… She had mentioned cats before a few times, but always in the context of stories. This was quite obvious lucid hallucinations.

[To confirm, featured beauty of a cat is Mog, my parental home dwelling feline, possessed of the most stunningly thick fluffy stomach, but would happily rip out your spleen if you touched it 😦  I have had to learn to admire without touching!!]

The ill lady was moved to her own room on Wednesday afternoon as she was vomiting, for infection control reasons, so I gave her cousin a message to advise him to call the desk and get an update. When I told him about the cats, he said hardly anyone had seen it in action and he had been having a real struggle getting people to believe him as she always discussed it in the context of past cats, not current cats :/ It kind of made it hit home how hard it must be being the relative or carer for someone who is showing signs of dementia or similar, where you need it to be taken seriously to get help and assistance… You are essentially relying on medical professionals either witnessing what you do, or believing your account, which can then challenged by a suddenly rational and sane relative, leading to trust problems etc :/

I am finding one of the other ladies I am in close proximity with a touch more difficult. She is possibly just very hard of hearing and doesn’t realise/want to realise, but she has no concept of a conversation and will quite happily let me talk in response to her for a few minutes and then continue on with her train of thought as if I had never spoken >.< We have als0 just had the conversation about whether or not I ‘am finished’ – ie could I please turn off my desk lamp, as she was woken up by someone cannulating her, and cannot get back to sleep, as the light is shining too brightly through the dividing curtain. This is  totally understandable and I turned it off immediately so she had a chance to fall back to sleep (completely planning to turn it back on once she starts snoring again haha), only to have her then turn HER lamp on about ten minutes later 😀 Blehhhh. I can’t see well enough in the dark to type easily without it 😦 Whilst I am on a bitch roll, I also had a teeth grit moment earlier with her, along the lines of her not at all listening to what anyone else says ever, where another woman was holding back tears from severe arthritis pain and she blithly said something to the effect of, ‘oh yes, pain is awful isn’t it, like toothache… Toothache is awful!’ Yes. Toothache can be awful. But it is not the same kind of pain as arthritis pain and you cannot really compare two sorts, between two different people.

When you are in a room where you are the only one not taking any pain medication (rude of me to notice?), please refrain from talking over someone else like that :/ …aaaand there are those sweet snores. Light back on! 😀 I prefer her when she is snoring 😉

I had a lovely moment with one of the ladies before talking wool – yes, this is the conversations I now have on a daily basis 😀 This is one of the ladies in my bay and she crotchets, whereas I am very slowly and lazily teaching myself to knit. I dug up the page where I bought the wool I am currently using to show her – and yes, it is horrendously expensive for wool and is coming from the US… But every time I look at it or touch it – and then every time I visit the website I get gooey feelings in my tummy :O I have some serious wool issues apparently!! https://www.etsy.com/uk/shop/KnittedWit

Wednesday was an exciting day in medical terms, as it was the first day of three pulses of methyl prednisolone. I was already taking 30mg prednisolone daily and have been since hospital admission nearly seven weeks ago. I also spent several months prior to that this summer tapering down from a 20mg dose I was on as an ’emergency measure’ when Death Toe first kicked off… It clearly did shite all to fix THAT situation >.< I am now also falling into the category of ‘long term steroid use’ so having discussed with one of the doctors here, will likely be starting some kind of calcium supplements to protect against osteoporosis tomorrow. I have already been taking super high dose Vit D3 supplements for over a year, through my own research and getting the ok from GP, when mid-summer, having spent HOURS outside each day, I was still showing low blood levels. Until now I have been buying it myself as no one so far thought it worth adding to my repeats… Depending on how the repeat prescriptions/shared care thing is worked out maybe that can be added on finally, as yep, longer term steroid use also has implications for Vit D levels :/ At least I got a head start on that one!

https://www.drugs.com/methylprednisolone.html   –> I LOVE that there is a website called drugs.com 😀

It is the middle of the night/early morning Friday and I have just finished pulse two – pulse meaning bag going in as an iv through a cannula – this one finished so late as the cannula used yesterday was already being a douchebag for the first dose and today refused to flush at all and had mega kinked. So had to wait for someone to come and recannulate me at about midnight :/ Doesn’t bother me as I am usually awake then anyway, but what is a pain in the arse is that this must now be at least 20 cannulas in the nearly seven weeks since first admitted… SO when you count the other two weeks this year when I was on the burny burny iloprost, I must now be up to at least 30 this year! When you add in all of the millions and millions of blood tests, I have “unfortunate” veins – best description ever, as landed on me earlier this evening when the flush refused to work 😀

Other members of the dermatology department have also been to see me since the photoshoot to start sizing up possible biopsy areas and get a better understanding of the rash and where it is most prominent etc… One of them, when confirming that the biopsy would NOT be taken from anywhere near Death Toe, described me as “peripherally compromised” 😀  Along with the ‘non infectious offensive waste’ sticker on the bins in the bathrooms, I am coming across some of my new favourite phrases these last few days!!

…is it wrong to eat a cheese stick at 2am? Nahhhh… Cheese stick and salt & vinegar pringles??? Nahhhhh 😀

…Complainy light woman is currently singing to herself in quite a sinister manner :/ Maybe in protest at the light being back on?! Ahh and now someone’s machine is beeping – obviously in no way intentionally or by their choice and she is first asking me if it is me beeping… Yes, because I make machine beeping noises at 2am for fun all of the time… and because you making passive agressive faux questioning comments about it is exactly what we were missing to solve the situation, thank goodness you were here :O If she tries to insinuate tomorrow that my light kept her awake when she has had a cannula, a blood pressure check, a beeping machine and at least three toilet trips since midnight I will be most peeved…

The other exciting medical thing that happened to me today (technically yesterday now… I mean Thursday!) was getting the first of five planned sessions of plasma exchange!! This is being done again as a bit of a temp measure to reduce the disease activity, as whatever type of vasculitis I have, they have narrowed it down sufficiently that it is very likely that plasma exchange is going to be helpful 🙂 I will get Sunday off – apparently this will give my body a break, during which time I can build up lot of lovely new plasma to be sucked out of me on Monday 😀

“This treatment is sometimes used in patients with severe vasculitis where antibodies in the blood are thought to be important in causing the disease. The treatment involves removing antibodies from the blood using a machine and returning the “cleaned” blood back to the patient. The treatment may necessitate giving blood products to the patient including plasma, albumin or immunoglobulin. It may also involve giving drugs to thin the blood and prevent it clotting in the machine.” As copied from the Vasculitis UK procedure glossary!

So this is what the tunnel line – Hendricks III – was for. My blood was sucked out of me for about 2 hours, and span in a centrifuge to seperate out my plasma,which can be seen in the baggie in the middle pic – plasma is yellow!!! Then some bits and bobs from donated plasma are added back in and given back to me, so I have new plasma without any bad guys floating around in it 😉

The main side effects are being dizzy and shattered – the gentleman in charge of the procedure and the insane machine pictured above stayed the entire two hours and had to deal with me and my billion questions 😀 – but mainly he was there in case I had any serious reactions and to make sure I didn’t keel over! I managed very well (he said) and he basically left me with the warning that I will feel the full force of today’s treatment tomorrow… So having so far not ventured down again since Mum left, I went on a mission after a hefty nap down to the concourse where all the shops are. This involves about… 30m horizontal walking and down three floors in a lift in the middle… So about the absolute exteme I can manage walking anyway, given the dead toe thing happening, although the lift in the middle gives a good leaning option halfway 😉 The thought was, if I am going to be increasingly knackered and feeling woozly the next few days, I am sure as hell going down at least once whilst I think I can manage it!

I ended up going to the body shop and spending almost £25 on myself in an epic splurge of awesome smelling goodness – I may not quite have finished my shampoo/conditioner/moisturiser, but by the time I can walk that far again, I might have 😀 So yep got some rainforest shine ones which are the best body shop ones for curly mad hair like mine (used before, not speculating!!) and! AND! something amazing called… rainforest moisture hair butter apparently – it is supposed to be used as a conditioner, but I scrunched some into wet tangled curls and just left it in, and my hair now smells amazing and has gone into soft fluffy curly wonderfulness. Yes, it is a complete untamed mess, but I am very grateful for having so much of it 😉 It makes an awesome pillow/wall to hide behind!! I then reached floop level and went and got the world’s largest chai latte – no shot of coffee as I suspect too much caffeine would seriously confuse my system at the moment… In fact it probably already is, as I am awake still haha 😀 It was AWESOME as was the cakey thing… The two handles alone made it worth getting the largest size!!

img-20161124-wa0002

I did get seriously shattered when I was down there and spent best part of an hour looking like an escaped patient, tunnel lines dangling around and having some serious wall leaning times… BUT spending an hour or two off the ward now and then is very good for the soul. Also then hit up the M&S food place on the way back and got above mentioned cheese stick and a reduced chicken/pesto flatbread thing that has ‘tomorrow’s lunch’ written all over it, that the lovely ward staff have let me wang in the fridge 😀

I had an awesome chat with littlest bro, who remains smack bang in Hurricane Otto territory and is possibly stranded now as the government are cancelling all of the buses :/ He was trying to escape to…. Mexico….? Check out his very strong beard 😀 😀 (Sorry sprog, couldn’t help myself!! xxxxx). Also see side chunk of curls that escaped me lying on them for epic soft curliness – you sadly can’t smell it, but let it be known that I smell incredible.

screenshot_2016-11-24-21-43-43-1

The next few days hold one more dose of methyl pred, four more loads of PEX, a deep biopsy of my livedoid rash (courtesy of dermatology), some kind of calcium/alendronic acid thing to stop my bones being leached by the steroids and I THINK a visit from the vascular surgeons to have a decent poke at Death Toe and HOPEFULLY revisit the idea/set some criteria in place for an amputation… Not enjoying watching the little bugger falling off. Although, to give him his due, he dealt with the mission to the shops very well and has actually had a relatively good day! This may also be due to not having missed any painkiller doses today though…. Ahh maybe Death Toe was having a nice day?!

Anyway, the cat is a bit out of the bag re me turning 28 today (Friday!) as a few have already jumped on it on good old facebook – one of the lovely ward staff was making sure to tell everyone, presumably to make sure I get extra loved up tomorrow 😀 I can quite happily say that I have not felt a moment of being sad or gloomy so far, I think if I had remained at the previous hospital in that weird limbo I would have been bawling my eyes out, but I don’t feel sad about it right now… Even being SO much further from friends and family! I feel like for the first time in two years I am in the one place that stands a good chance of making me better, so I can’t be sad about what is basically just an arbitrary date. Not when I have had so much love thrown at me over the last few months 🙂 I also had Soz land the below epic glittery collage on my facebook wall bang on midnight, which triggered off some happy tears and some laughing at how so many of the times we are together we are covered in glitter 😀 She is the best of eggs xxx

kath-soz-glitter-4evaaaaa

Whilst we are on fave things in the world, something before popped up to remind me of my fave book 🙂 The Silver Wolf by Alice Borchardt (the sadly deceased sister of Anne Rice) (and the remainder of that trilogy and her other two book series, The Dragon Queen) remain my favourite books of all time, ever. Anyone who knows how much I read, may appreciate that is a big claim to fame – I still re-read them all almost every year and have done since I was about 12. I remember the very first time I was reading The Silver Wolf, Mum had bought it for me as a present for a school trip to France and I was reading it sitting on the coach and my mind was actually blown by how BEAUTIFUL her writing is 🙂

One of my favourite lines was always the below, so much so that I had it cheesily pinned onto my noticeboard in tiny Uni room in first year… It always really beckoned to the little insomniac in me 😀 I shall end on this and go to sleep 😉 Got a stash of packages and cards to roll around in tomorrow, the majority forwarded on from self-purchases haha 😀

“[She] followed the wolf drifting into darkness where, in the shadowland of sleep, she and her companion could run free … through the endless forests of her dreams.”

The Great Escape (Day 40): In which Mum Kathnapped/DeathToenapped us down to Addenbrookes… and the first few days in the promised land :D (Saturday to Tuesday – Days 41 to 44!)

THE PACKAGE – FRIDAY!

So! Apologies for taking so long – life has been pretty chaotic since the last post, as I am quite sure everyone appreciates 😉 I have actually seriously missed updating the blog – it was a massive pain distraction and stress release for over six weeks, so being unable to properly sit down and just spend some quality time with my laptop has been driving me insane 😀

Thursday night was spent packing in a giddy delerium and then carefully not committing murder, as I figured it would ruin the epic jail break if the place was overrun with the police for Friday morning…

ddsf

Friday morning I had slept very little thanks to Mrs Meaty Sniff and had my stuff lying all over the place! My convo with my Dr on Thursday re the discharge was literally half an hour after Mum had phoned me – she came around the curtain and I got in first with “I have some wonderful news!” and a huge grin – to which she said she knew, the desk had had a call already from Addenbrookes and…. something along the lines of the referral had been sent as we had discussed [she was referring to Wednesday when I INSISTED on her faxing an updated specifying that this was to be an inpatient referral]. Now given that since at least mid-October I had thought that what I was requesting, I very carefully didn’t listen to anything but the important bit which was about my drugs! I would be discharged with all my own stuff I had brought in, plus enough pain relief to keep me going for at least 24 hours – she went to get this sorted for me and I didn’t actually get to see her again as I was too busy with the weird eye exam business!

Mum showed up super early at 7am – both of us were very giggly and I was treating it as a proper jailbreak – we loaded everything on top of me on one of those tragic porter wheelchairs…. AND THEN! I got to leave 😀 😀 😀  I got to witness my new disabled parking badge having its first use ever as well, which was a fun bonus moment. It was absolutely leathering it down, so I had to stick-hop into the car – then despite Mum having driven down from Scotland late the night before, we just hit the road and got cracking. I then spent the next… 48 hours at least, being referred to as ‘the package’ by my Aunties 😀 E.g. – “Have you collected the package….?”

I had had all of my morning meds with a jammy roll super early before leaving and pain wise managed the journey a LOT better than either Mum or I had anticipated. I think being on a complete adrenaline jailbreak high helped hehe – also it is so so rare I get a car journey with Mum, so I made the best of it and talked her ears off pretty much the entire way 😀 This was interspersed with me crashing out very suddenly for ten minutes a few times – classic autoimmune floop – but wiggling my foot around was enough to stop too much pain 🙂 She had loaded the car up with blankets etc. and I can confirm that a sleeping bag doubled up and wrapped around your shoulders is the BEST passenger comfort aid you can imagine! If she hadn’t already won all of the Mum points, she would have got a special mention for that bit of clever advance planning.

20161118_122801

The A1 was a nightmare – as far as I could tell, everyone wishes it was a motorway and it blatantly isn’t… It also had a LOT of roadworks and EFFING TRACTORS causing mad panic and sharp breaking from the idiots in front of us. I can confirm is very painful when you have a Death Toe and all of the blood is suddenly flung forwards against the Death Toe/Kath boundary – we were both squirming at the thought of it suddenly popping off in my sock midst traffic jam, which is about the closest I can come to describing what it felt like was happening! We stopped ONCE for food, pain meds and a stretch… HARD AS NAILS. It was still very rainy, so I used my shower sock to hop around in and probably looked very amusing….

20161118_111509

SIDE NOTE – [Typed this up in several chunks over Sunday to Tuesday…. So this would have been Monday night, late]   Just had the LOUDEST and LONGEST single snore ever from one of the women over the room 😀 I am squeaking back giggles!!

When Mum had made her major phone plan with the vasculitis ladies at Addenbrookes, they had basically told her to get me there for the outpatient clinic and they would see me asap, with notes all over the appointment saying not to cancel it if we were late! We got there with some serious reliance on the sat nav and FYI the whole area looks like it is being rebuilt! Some insane level of building works got in the way but then we found the right car park…. Bear in mind at this point I was still determinedly not getting too excited as I was TERRIFIED that Mum had the wrong end of the stick (despite her continual calm reassurances – six weeks in limbo, with it being implied I wasn’t exciting enough to refer has seriously knocked my confidence in my legitimacy as a sicky!) and that they wanted me down for just an outpatient appointment and weren’t ever planning to admit me :/  Still, the level of adrenaline in the car was extreme!! Once again my new ‘super powers involve slowly kiling herself’ badge proved itself to be pretty flippin amazeballs; we got parked VERY close to the door and Momma grabbed me a wheelchair and we entered…

THE PROMISED LAND 😀 Friday afternoon, Saturday, Sunday…

Mum had a particular ward scribbled on a bit of paper so she whisked me straight off in a very determined kind of way – she is getting pretty good at wheelchairing!! This place is HUGE by the way – going past all sorts of fancy murals and shops – THERE IS AN M&S FOOD SHOP AND A BODY SHOP, JUST SAYING – and we found the right place and I was very quickly being introduced to the actual vasculitis team I have heard so much about from so many people for months 🙂 Several of them at least stuck their noses in to say hello, reinforcing my suspicions that there has been quite a lot of background name dropping of Death Toe and his plight 😉 It was funny seeing Mum realising that something else had been going on in the background as well – someone let slip Death Toe for example before I had used the name 😀

I went through a rough history of symptoms, how it all began, what had happened so far in terms of treatment and summarised the last six weeks of my life sitting on a hospital bed. It was nice having Mum there actually, she had been to one Dr appoinment previously with me that I remember, and given the last few weeks it felt good to give her a bit of ownership as well over the whole stupid disease business. I was on a massive adrenaline buzz and was also still absolutely shell-shocked by the wording of the referral fax, so found myself feeling really defensive and panicked that they would kick me out… They were so incredibly fabulous!!! Within literally an hour of arriving I had had EVERY blood test ever taken repeated – with a CRYO FLASK making a casual appearance waiting for the sample to be plonked in… Yes, you read that one correctly. A cryo FLASK!! :O

Spoiler alert – that test is already back and was negative, but cryoglobulins have been checked again today (Monday) before any level of PEX is started, as that would obviously remove the sticky little bad dudes and make any future testing largely pointless!!!

They also had a very basic admire of his Majesty and agreed that he was not only gross but that it was quite likely the case that auto-amputation would be the best route 😦 This still makes me sad, but it is easier to swallow when the same discussion involves the list of tests that will be done and other specialists who will be having a poke at me… I was given a bed in a shared ward and it was at this point I think I started to breathe properly!

Once Mum went to go check into a nearby hotel, I got a bit settled in and introduced myself to some of the other ladies… Then looked at my phone… The sheer number of messages of encouragement and support for Mum’s epic jailbreak has been incredible – both from friends and family, through facebook and then through the closed Vasculitis UK support group! This has meant a lot to me (obviously!) but to my family and friends as well, to know how much love and support I am receiving – I really don’t feel worthy and am just going to try and make it turn me into a nicer person and pay it back/pay it forwards somehow in as many ways as I can find 😛 My particular fave message moment came on Friday, and was the Birthday Girl calling me a lovely magic unicorny glitter pump! 😀 Big smiles in the car at that one on the journey down 😉

One of the weird fun bits of getting settled in was – after all of the pharmacy shenanigans and clerking in – hearing that I was getting to self-administer my own medication!! For the first time I was offered the chance to inject myself with dalteparin, the Addenbrookes version of the anticoagulant you get injected with every evening to stop bed sores etc. due to shite mobility in hospitals! I absolutely bossed it, genuinely didn’t feel a thing… Have continued to do so since that first one 😉

On the Friday night, I was knackered and thought I would conk straight out, but one of the women in the room was in a lot of pain and crying on the phone for hours in the middle of the night. Unsurprisingly this made it hard to sleep, so I woke up pretty shattered still… BUT!

THEY DO TOAST HERE 😀 IT HAD BEEN OVER SIX WEEKS SINCE I HAD HAD A SLICE OF TOAST!!!!!! To confirm, toast. For breakfast. Had missed it.

I started Saturday off with a massively lame project (after toast… and a shower, I’m not THAT sad!) and made the world’s saddest excel spreadsheet (the below is a rough initial version!) – it is exceptionally dweeby but feels like a nice bit of control again. I went from having control over my own drugs for 18 months – getting prescriptions and dishing them up each morning was part of my routine – and then all of a sudden for six weeks have not had any control over them, not writing down when I take painkillers etc. I am a totally pedantic control freak, especially thanks to the meth making me distrust my own short term memory, so maybe not so surprisingly I had actually missed such simple things 😀 (yes, my spreadsheet has already been admired and giggled at). I was also immediately skipping around helping the other ladies retrieve dropped stuff under bed etc., crawling around on the floor is good exercise – basically my ONLY exercise!! – it is once again amusing me how ridiculously flexible and hypermobile my joints are one moment and yet I wake up and literally cannot move for a while – still having major claw hands in the mornings 😦

img-20161119-wa0000

Mum spent all Saturday with me and we had a bloody good wheelchair mission around the shop area – found where everything is and got my hair cut!! Has been a bit overdue and all of these older ladies like it to be a  billion degrees in the wards, which doesn’t go well with six tonnes of thick curly hair on the back of your neck, when you are already on drugs that make you sweat like a roasting piggy!! I would like to take a two second moment to acknowledge the existence of the below – I am testing how far I can walk soon and will buy some and see if they are as good as the Yorkshire brand ones…. MMMMM!

20161119_120831

As well as hair chop, lunch and a few little sneaky bits and bobs, Mum also left me with some awesome pj pants, fluffy socks and a christmassy coloured woolly wrap of the sort that ladies wear… very spoiled! Below does demonstrate a) my new fave ‘hair off neck trick as massively warm in here’ b) new much shorter and thinned out hair and c) my sleepy love for my new pjs…

Saturday afernoon/night I was definitely dealing with what may have been delayed shock from the jailbreak and change in scenery – I felt pretty awful physically in terms of normal unwellness, not the usual autoimmune type crap… I’ll be honest I still now feel absolutely buggered,  so am finding it hard really to think what is due to the tests, new routine, condition flare… Everything?!

Although so tired, I wanted to fully clear my mind, as it kept angrily chewing over that referral fax. I had a paper copy so emailed PALS with a photo of it also attached, to ask that they put copy of the letter sent 6.11.16 into my notes HERE, as it quite clearly contradicts quite a few of the points in the referral AND makes it pretty bloody clear that I was requesting this referral for a long time. So so many things on that referral have majorly ground my gear – especially when looked at in conjunction with my letter >.<

Saturday was also one of those nights I had to question whether or not I was a nice person any more. Phone Call Woman was going for it again for night two in a row. To understand this, imagine a person who mostly had a lot of visitors around all day, variously in a lot of pain and upset. Then think everyone else is asleep, I have my curtains round and music in earphones, sitting plinking away at laptop and then the phone calls started at 11.30pm and continuing until 2.30am, with a lot of crying and arguing, all conducted at totally normal volume without any indication she was aware she was in a room with six sleeping elderly ill women and one pissed off younger ill woman… I posted the below at 2.20am approx. Sunday morning on facebook and then had made it private, thinking it was actually a bit mean… but with hindsight, being in pain does not excuse you being a selfish bitch!

IF YOU HAVE ENOUGH DUCKING BREATH TO BE ON THE PHONE FOR OVER 3 HOURS, STILL TALKING CONTINUOUSLY AND WHINING YOUR ASS OFF AT 2.15AM, THEN THE PAIN IS NOT “TAKING [YOUR] BREATH AWAY…” *YOU* ARE TAKING YOUR BREATH AWAY. SHUT. THE. DUCK. UP.

I have found the standard approach to privacy slightly different down here – no one has in any way stopped me doing so, but apparently having the curtains closed isn’t brilliant as it cuts off visibility of the other beds from the door. I explained why I wanted to do this for the evening and night time along the lines of having been in hospital now for six weeks at least, so closing them at night time is literally the only illusion of privacy I get, except for when I am in the loo or showering. Even when my curtains are closed, I am fully aware nurses will come in and out with a few seconds warning to take blood pressure etc… Privacy isn’t really a thing in hospitals :/

Again – a quick aside – the FOOD! The food is nicer 😀 No one has tried to feed me cabbage in so many days – the below may not apparently look good (as per popular facebook opinion!) but it was tasty and had three identitifiable NON CABBAGE veggies! Lunch today was a tuna baked potato with a lot of fresh mixed salad and there was a LOT of tuna mayo and extra salad cream – literally would not have made it any differently for myself 😀 Much much more emphasis on the menu on veg options and also lighter evening meals available 🙂 still all coming with regular cups of tea 😉 Yes, it isn’t perfect, but I am being fed three times a day and looked after very well indeed, which given how feeble I am right now is very much appreciated!

fb_img_1479731394213

I had said bye to mum Sat night and then she dropped in again on Sunday morning to give me another hug goodbye – we managed all of this without tears and as crude a saying as it is, I really feel like (hope that!) SHE feels like she has been able to firmly grab her Mum-balls back – I have a lot of anger towards my Dr for making my Mum feel so upset and powerless for that time, but then she took action and sorted all of this out in one fabulous morning!  Sunday was remarkable for getting the internet sorted for my laptop!! I had been getting excited looking into dongle/dingle/dangles and then my parents dropped the bombshell that you can actually just connect with usb or bluetooth and use my mobile connection 😀 Getting that sorted made me feel better almost instantly – partly sitting properly at ‘my desk’ (hospital table with laptop set up) makes me sit properly instead of being shhhlumped on my bed! It also means I can type until late at night, which is definitely the best pain distraction for me 🙂 I had also been missing updating this blog – there is so much going on, it is only by getting it down in writing that it feels like it is stored safely outside of my untrustworthy short term memory and autoimmune addled brain! I made a bit more of an effort on Sunday to lay down some ground rules with my fellow ward mates regarding me needing some time and I think it worked, in terms of them all taking a slightly different stance 🙂 It is lovely but also slightly amusing – instead of now having me as someone to use for talking to, I have about five women worrying about me getting enough sleep and telling me off if I spend too long talking to one of the other women 😀 Its like suddenly gaining a whole room of protective aunties in one evening! Phone Woman had another belter of a night on Sunday for example and Monday morning they weren’t bothered for themselves, but were all outraged at the fact that she had kept ME awake all night again!

MONDAY FUNDAY & TUESDAY BRUISEDAY

I had a super early shower on Monday, being rather awake after another upsetting phone call night and this was a very wise move as I was then pinged down very promptly to get a tunnel line fitted in the vascular access unit – I think by the renal team?! I appear to have been on their list for lines that morning 😀 The whole thing was quite un-scary as I had JUST had my morning painkillers when I was wheelchaired away, so I dealt with the whole operation with an oramorph hazed cheeriness and downright nosey level of asking questions and keeping up a running commentary throughout 😀 I like to think I maybe made their day a bit more amusing 😉

Forgive the blood – he got a little oozy and has since been spruced up with a new dressing. I’d say forgive the eye bags but I’m actually quite proud of how close I’m getting to Puss in Boots from Shrek eyes in the first pic. I say he… He has bee dubbed Hedricks III by a friend of mine at stupid o’clock last night. I am sure he will serve me faithfully! This line is basically for plasma exchange and has an in-chucker and an out-sucker, with the line going in under the skin some way – ‘tunnelling’ under the surface – before going into one of the big veins closer to me hearty! This is to help keep it firmly in place and lower chance of infection, but the main point of one of these is that it can stay in place for weeks or months for plasma exchange, chemo drugs etc. and will prevent me needing billions of cannulas!

Re the plasma exchange, this is planned at some point, but no one is willing to commit to a date just yet, as the second they have started cleaning my plasma of whatever nasty little proteins are in there (Cryos being one of the suspects, but by no means the only thing that could be doing damage!), they can no longer reliably get a positive blood test out of me!  I have already had… by this point late on Tuesday, the full blood works done at least three times and two cryo tests done since Thursday. One came back negative already, but with it being a notoriously difficult test, it appears they are happy to take several samples as standard practice over a few days and give it a proper chance to come back postive. It is still – I think – the fave diagnosis, but another deeper biopsy is also planned for looking at options such as CPAN from… somewhere… Do ya think you can designate your least favourite chunk of thigh or ass? 😀

Then needed a cannula wanging in for the standard post tunnel line antibiotics dose – TWO hour drip?! Still got the cannula in for easy access, but getting that in, it was confirmed that my veins are indeed now very battered from too many cannulas and tests – hence the tunnel line being a sparkling idea 😉

I got back after being off the ward anyway to hear that Phone Woman was moved in the early afternoon to another bay that was more appropriate for her medical needs. I do genuinely hope she gets some more sleep herself – I was struggling to work out when she was managing as she had visitors all day every day. The visiting hours are one very surprising difference – there is an amusing two hour protected time midday when the lights are fully turned off and the door locked – its like an enforced siesta and now that there will be NO MORE PHONE CALLS 😀 I am actually planning to use it!! Apart from those two hours though, it is basically a free for all, which is also quite tiring as the level of bacground noise remains quite high – there are a lot of devoted husbands in particular in attendance for many hours daily!

Monday night I was feeling super happy – so much stuff got done – I had been nervous about the line as well after hearing it being called “invasive” for months, but it wasn’t all that traumatic really 🙂 Less so as well   it is for a bloody useful reason!! I woke up on a proper chirpy high after sleeping really well – at least six straight hours! – and once again got whisked away super quick for exciting things! I had an ultrasound done of Death Toe leg checking again for large or medium vessel involvement – was pretty sleepy and the soft ultrasound noises had me almost conked out a few times!! Nothing obvious that I am aware of… I am sure I would know by now if any clots had appeared!

Then was back on the ward for very little time and was taken for a mri! I think this is my fifth this year maybe?? This one was of my aorta – I mean I don’t generally get overly surprised by tests, but I am very aware that the aorta is NOT a small vessel… Possibly checking for something like TAK?! I suppose a lot of the more recent things like eyesight being blurry etc are either drug side effects or condition related and were not around when the original list of suspects was being drawn up… Will ask tomorrow!! I do bloody love a good mri – fell asleep properly a few times in this one for little micro naps and had to keep breathing in and out and then holding the breath out… It got very confusing when I was so completely out of it. Death Toe also started to kick off – see further down, this was understood later on, but at the time I was just worrying they would think I was scared of the mri or that it would give misleading results if my pulse was up due to pain 😀 I came out apologising profusely for his behaviour and confirming how much I loved mri’s which they found very amusing. The bad side was, I had to lie with arms above my head and although I had my long arm warmer mittens on, my hands and arms in particular stiffened up very very badly whilst I was in there. When I was rolled back on the table to come out, I literally couldn’t move my arms – a mix of pain and stiffness and also just absolutely wiped out! I had to have two of the mri nurses move my arms into. normal position and then very slowly help me sit up. Morning claw hands and stiffness have been getting worse – I think I am generally having a pretty whopping flare at the moment! I was so bloody tired this afternoon after all of this testing, I was basically falling asleep mid-phone call with both friends and Mum – oops!

Ooooo Death Toe had a proper photoshoot 😀  A very nice lady from dermatology came and we spruced him up and got a fancy flash camera on the go and took many many pics… The  ladies were curious as hell afterwards, as all they knew was that flash photography was taking place behind my closed curtain 😀 This did mean he needed a new dressing afterwards – again see below re oramorph >.< and it was epically sore – even the time waiting for the dressing to be set up etc was stunningly ouch – the cold in particular seems to have been bothering me today :/ Dressing should be able to stay on for a few days now though, unless anyone wants a peek! As far as I know now, possibly starting plasma exchange – hereafter PEX – and getting a chunky biopsy at some stage…. Also waiting for some definitive cryo result decision and as far a I know, still very excruiciatingly ANCA negative 😦 Being rare is very annoying when it comes to diseases!!

We all like a little Tuesday ward giggle 😉 Had two of the ladies earlier discussing how annoying it was when one of them keeps having new things added to the list of things wrong with her… She had sensors on to measure her heart rhythm and had some med students observing and doing the practical side of the exam… One of them was apparently a “very handsome young man” – cannot verify this as didn’t see!! – and these med students were gettng very worried as her pulse picked up and did little skippy things when he was leaning over her hahaha 😀

To end on a partially serious note, a friend drew my attention to the below online survey. There is an information sheet available straight away and it is designed for “women with autoimmune rheumatic diseases who are aged between 18 and 49 years who currently live in the UK” – when you read the sheet, they basically want women with a chronic illness, such as vasculitis, who are thinking about trying for a baby in the next 5 years, are currently pregnant, have been pregnant in the last 5 years, and/or have a child (or children) aged 5 or younger… I think that covers quite a lot in that age group!!

Basically, even if you are male or in no way fancy doing the survey or think it relates to you, please take a few moments to have a think about the overlap between a chronic illness and family planning at all stages: as it relates to physical disability, delay in getting a diagnosis, all of the horrendous associated mental health problems, work/threat of losing your job, serious serious drugs, having to a plan years ahead and risk losing remission in weaning off drugs to start a family… the prospect of treatment potentially stretching on for the rest of your life ahead of you…. all these things massively impact women with a chronic illness ANYWAY, but have different and all too often undiscussed implications when it comes to wanting, planning or having kids, even if not day to day then in a silent hovering sort of way.

https://cardiff.onlinesurveys.ac.uk/star-family-study-online-survey-2016-v-1

I have shared things like this before, but the point of doing so is that it is only by collecting responses from those directly impacted that health care providers at all levels can improve the information and services they offer. This survey covers the topic very well to my mind, giving me a chance to mention for example, that I was terrified of being started on cyclophosphamide without having explored all other appropriate options carefully as it has a tendancy to cause irreversible loss of fertility… Not what you want when you are about to turn 28 and have yet to pop a sprog!

This happens to be a particularly current stress of mine, as I had to read a referral letter claiming that I remain “very reluctant to even discuss Cyclophosphamide as a treatment option unless it is proven that [I need] it” – no shit Sherlock!!! Is that not a normal stance for a potentially life altering toxic drug, when no one had given me a diagnosis or a treatment plan?! I had a beautiful moment when very first checking in to the vasculitis clinic and it was raised as part of a general discussions with Mum and the team and they all quite clearly confirmed that they didn’t think I was insane for having that stance. It made me happy that Mum heard this as well, as it has been something I have found so hard to talk about with her – we did have a fleeting blether in the car, but until it becomes an immediate issue, for this and other drugs, I am just trying to remain calm!! But… Hakuna Matata!!! I am out of there. I am in the promised land… I am in a happy mood. I am spending WAY too much money on myself and there are going to be SO many bits of post coming my way… Which I intend to blame on other people sending to me for birthday presents, but lets be honest, 90% of it is going to be me haha 😀

Whilst finishing off this, the longest, latest update in history, with the earlier level of tests and things that happened today meant I FORGOT to take any oramorph since midday and bloody hellfire I could tell…  See above comments added in about general levels of ouch haha!! It was maybe about 8 hours since I had had any and I’m usually taking it every 4-6 hours now we (Death Toe and I) are at such a wiggly point, a smaller or higher dose depending how I am doing…. I was at the rocking and whimpery noise stage >.<  Some was delivered and helped pretty quickly – Death Toe is being a git, but then he has had a lot of testing things AND a dressing change with a period of prolonged exposure today… Maybe I should excuse him an evening being a git? Just also been given some transdermal patch thing called NITRO-DUR today 😀 What a name!! Goes on lower shin/foot in line with Death Toe and may possible widen up the constricted blood vessels by relaxing them… We shall see if it helps with the ischaemic pain!!

Ending on a nice little summary of life from one of the Vasculitis UK admin – wonderful woman, can highly recommend for a phone meltdown 😀 “You have a chronic, remitting, relapsing disease, it’s a lot to get your head around. What you are feeling is natural, essentially you are grieving for the life you had before” – she just nailed it!

Happy moment – making me smile every time I see one – there are bins here that are clearly marked as being for ‘non infectious offensive waste’ 😀 WHAT A CRACKING PHRASE!!

Anyone who feels like it, please cross toes for Hurricane Otto remaining non-eventful as one of my brothers has managed to be in the middle of it somehow!!