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

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

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

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

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

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

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

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

 

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

****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 😀

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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!!!

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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 :/

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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.

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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!!

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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!!

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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…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I’M FREEEEEEE!!! 😄

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

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

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

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

EDIT: Went with Herval 😉

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

THE GREAT ESCAPE!!!

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

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

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

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

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

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

Happy Kath!!!

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

Bringer of dreams…

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

…and breathe!

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

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

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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!!

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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.

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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

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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.”

Thursday – Week 6 – Day 39 – Mum rustles up some actual ACTION!!! FINALLY :D

Was about to start typing up a rather grouchy two day update this morning – had in fact already started drafting it up… Has turned out to be a very positive action packed day! – That being said, the negative is getting recorded for my own benefit as well as for the simple fact that this is not a pretty little fairy tale and does in fact involve toes falling off… But this time there is a happy(ish) ending 😉

I began yesterday (Wednesday) in a pretty vile mood, with regards to the lack of Dr contact and updates and a whole passel of negative results, which as far as I could tell meant Jack. One of The Three Musketeers came to see me pretty early on (this is on Wednesday morning) and I was pointing out that what we amusingly get to refer to as morning stiffness had absolutely walloped me. I felt like my back had been twisted all night and my hands took quite a bit of warm water to flex out of claw formation. This saddened me as although this was fairly common practice for waking up throughout last year, I have had a good few months where I really have not suffered overly much with the joint and muscle pain. Having claw hands was an unpleasant reminder of how much nastier this can get in terms of day to day impact than just ischaemic toes and fingers.

I mentioned the cryo test and the biopsy and I said as far as I was concerned the results didn’t mean a lot, due to the specific cryo procedure having not been followed – he confirmed that the biopsy had basically showed nothing interesting at all, which because it was of a definite livedoid rash area means the sample probably wasn’t big enough or deep enough. I said I would appreciate an update on the referral and brought up that I had had a particularly shit weekend… I then cried AGAIN! I am absolutely shitting fed up of crying in front of relatively strange male Drs first thing in the morning! They said my Dr had passed on that no contact so far and that they would make sure she knew I wanted a chat. Updated bloods got taken then pretty swiftly, as I pointed out they hadn’t been done for a while and confirmed that my toe was seriously manky when the dressing was changed on Monday. These were already back as of yesterday  evening and showed low white cell count, which when you factor in the appearance of my little friend means that a localised infection is basically a given again.

We managed to schedule DT dressing change for when my Dr could be around – she has not seen DT in person I don’t think since before I was admitted, but her and her team have instead been shown The Gallery of Death whenever they wanted! I showed her the weekend and Monday pictures and it was plain to see how it went from being drier and black and necrotic on Monday again (after THE SOAKING) to being gunky and wet and looking very infected. It is also a lot sorer in the way that I am beginning to sadly associate with infection.  In some senses it was a very productive dressing change as she could see how much of a mess it remained – I got a referral on the system for today to talk to the vascular team about an imminent toe chop plan! This in itself was exciting, but then also in the meantime confirmed that the referral would be chased as urgent and with comment that patient wants to be seen down there as an inpatient. I had very much thought that this had been understood from as long ago as June when first discussed, but this is maybe the folly of trusting in a conversation rather than insisting on things being confirmed in writing from day one. Has only cost me one toe!!

I didn’t even get to the point of raising the cryo properly but this is now basically irrelevant… as! Mum texted me earlyish this morning with a cryptic ‘may have some news’… Which I assumed was going to be about my exciting brothers or Dad and someone else doing something different… Mum had got on the phone to Addenbrookes to chase up my referral and appears her phone calls apparently crossed in the air with it being faxed! By the time she rang me, it was to confirm that Addenbrookes were contacting the Ward here to confirm I should be discharged tomorrow and that if she could get me down there by clinic hours tomorrow I could be admitted 😀 This has been the dream and continually frustrated plan of about four/five weeks in the running now, so I have now spent the whole day in super shock, alternately grinning like a loon and upending six weeks worth of crap onto my bed and wondering if they accept pringles as necessity items… I had some awesome visitors to celebrate without through the day… I also went for a follow up eye exam and due to how zonked I was (as demonstrated by me sleeping in the waiting room), was sent back to the Ward in disgrace 😀 Apparently you need to be awake to do an eye test… Right. Sleep!! Moving myself and a certain infected manky shitty little digit down South tomorrow!!! Noooooooooo weeeeeeeeeeeey!!!!

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P.p.s. It was Mum doing the whispering 😀 Don’t mess with Mothers!!!

P.s. Have a sloth fact for featured pic. I had a few…