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!
‘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…
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!!!
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!!
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!!
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!