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 😀
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!!!
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
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.
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!!
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!!
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 😀