My return home from Scotland was a slightly less stressy affair than my trip north had been… The car got loaded with all my xmas booty, the volume of which horrified Dad – and my post xmas booty 😄 (thanks cheesecake) and Dad wasn’t being tipsy and fiddling with the radio… I got a chai latte as well at Annadale 😄 Good times.
Within a few hours of getting in, Mum single-handedly annihilated Christmas, taking down the tree in a scary blitz of late night anti-festivity that I hope was therapeutic in some way… It amused and scared me in equal measures. It took the girls and I six days to erect that masterpiece and maybe an hour for her to remove all evidence, except a drifting of needles 😕
Christmas beauty 2016
She did comment on how SOME of my bauble choices were tasteful… It made me both suspicious and warm and glowy to hear her say that. Normally she says very mean things about my colour coordinating and style choices!! Each year I add a few to my collection, something we did at home always, picking one each. Last year I didn’t ‘tree’ because I was sulking (2015) and this year I was in hospital for eight weeks beforehand. This made me go into a delirious morphine induced Christmas frenzy and I got loads and loads of awesome baubles. My faves were Button Guys 😄😄 Mum even approved!!
So being home again post-Xmas was lovely, but parents were sticking around for a few days to do a lot of work on my house – I got to see it! – the bathroom is getting some serious attacking and we variously spent hours either wiring and doing actual hands on house stuff (guess who didn’t do that bit 😀 ), or perusing catalogues for towel rails, baths, sink and toilets… I am very much under a fairly aggressive eviction notice, which is verbally reinforced several times a day with comments about how colourful all of my crap is 😀
Why Wolf Town? Fave finally made herself an etsy site 😀 Wolf Town Art I was loving all of her arty bits and bobs before xmas/whilst in hospital before and showed y’all a fair few – and she hasn’t yet stuck up a lot on her etsy site (I will work on this………) but the name ‘Wolf Town Art’ is based on the history of our town and its a tale that has instigated quite a few magical flights of fancy down imagination motorway 😀
I came back very excited about seeing friends again after Christmas – and a bit more thoroughly, as before Christmas I’d been quite wacked from coming out of hospital and was fairly useless at seeing people. I had all sorts of civilised things planned in my mind and was spending the weekend first with parents doing gentle bathroom picking etc. Choosing a bath is horrifically hard by the way. I can understand why people walk into B&Q, point at one and walk out. I found this particular description on a website which massively tickled me though. They probably assume no one reads the descriptions, but I do and this is why 😀
“A simplified bathing solution from Trojan is ready to rock your bathroom in the form of Derwent Single-ended Bath. This sensational bathroom element would be an ideal choice, as it not just enhances the aesthetic value of your bathroom but also fulfils your practical needs with its superior strength. It exudes immeasurable opulence to the bathroom and promises to deliver great bathing pleasure like never before.”
Ehhh yeahh 😀 Who wouldn’t want immeasurable opulence in their bathroom? 😀
Anyway, my social, life dunking plan all went to crap… I was getting rather knackered last few days in Scotland to the point where I wasn’t doing much and then slept the whole way back in the car Then I was increasingly stiff and sore when back at home and was struggling to stay awake, getting irritable about everything and avoiding family feeding fests because of everyone having the plague. I turned down a shopping day out because I was wiped out and would have ruined it for Mum and Auntie as well – that should have probably had everyone on red alert haha 😀
GROSS PIC A BIT BELOW… YOU HAVE BEEN WARNED!!
So Sunday we had planned that I would see friends for the first time and I got Inside Friend round for food and got a proper good catch up…. THEN! I had her hiding in the kitchen because she hates feet… Was redressing Death Toe (still very dead)… and sodding big toe next to Death Toe has a sodding ulcer. Ohhhh yes. Had a poke and we have pus ladies and gents, we have pus!! This toe was previously infected last December and eventually calmed down right about the point Death Toe was born. The ulcer is the small dark hole to the top corner of the nail. This may look fairly insignificant, but not when you have had at least seven infected toes start off like this previously and one of them then decide to die, all just for shits and giggles. The pus (because you are all dying to know) oozed out of the scabby area to the right of my big toe, which is where the previous ulcer was and is clearly where the skin is still thin and damaged. It had that creepy hollow toe feeling going on as well when I got some of the gunk out 😦 But yep. I have called him Fester. Took a family photo of him next to Death Toe and baby Voldetoe. Who is still painful and unchanged and ischaemic. The only one missing is their cousin ‘stupid sore ulcery patch on side of foot guy’ who needs a catchier name Please excuse how yellow naked Death Toe is. This pic was taken at a delicate moment between dressings, with one of the nurses giving him a bed bath moments later to clean off some of the iodine.
Anyway. After seeing this and swearing my head off, I wasn’t sure quite what to do, as yes I know I am immunocompromised, but didn’t want to overreact and wasn’t sure if e.g. starting the fluclox I had in the cupboard was an ok option and then wait until the morning for emergency GP appointment. I got a few metres down the road to Fave’s, watched the first few moments of a film and in the meantime was seeking some advice to see how much I needed to overreact. Overwhelming consensus was that with me being triply immunosuppressed (rituximab, prednisolone daily for a good few months now and having had plasma exchange) that any sign of infection meant A&E time. 111 agreed and I had a bloody good weep, threw some stuff in a bag and went to A&E. Regarding the fluclox, ‘normal’ people could do this without causing any harm… But I have had so many infections and speed is a little too much of the essence for them to waste it on an inappropriate antibiotic for the type of infection AND it can mask the blood test results as well! So yes, if you are in a similar situation DON’T take any antibiotics you have at home, go and get swabbed and get blood tests so they can target it appropriately!! The only ‘nice’ thing about this entire situation and the first thought that went through the background voice in my head behind the swearing, was that it at least explained why I had been so ridiculously tired and crap. I am waiting for the rituximab to start working so I can be frolicking in the daisies and skipping to the park to host hoop festivals and glitter orgies… So feeling excessively tired and sore and it worsening and not knowing why was alarming me. At least now I know the why!!
Dad was still around and did a late night drive to take me to A&E. A&E docs agreed I was very right to have gone in… and then admitted me, eventually. They were gonna send me home with oral antibiotics as SURPRISE SURPRISE! – temp hadn’t risen and bloods didn’t show anything too exciting, but when I pointed out that the same had happened with Death Toe up until it being… Death Toe! and that I literally NEVER spike a temp, no matter how infected, the on call medical doc came and had a nosy at both toe and notes (making repeated shocked and disgusted ‘oh my gosh’ noises the whole time haha!!) and he got me admitted pretty much instantly with a load of bags of iv clindamycin planned. I was on the same ward I was on for weeks last time, for the whole of Monday from about 6am until 8pm ish and then went down to the Gynae ward (the one I was on until I was swooped away to Addenbrookes by Supermum). I have had about… eight bags of antibiotics so far and have been absolutely shattered and my toes PLURAL are sore and shitty and I am rather fed up. I have absolutely no idea how long I’m in for. Blood results don’t show anything too exciting but pretty much all of my records on file here will have been taken when I was dealing with infected digits – and having spoken to GP, apparently the results here only show what is on hospital records and not the ones on my GP records!! (Although this is apparently due to change with some fancy new electronic business being introduced…)
So I am now wondering exactly what they are looking at, as the bloods I can see on Patient Access go back to 2011 (pretty good baseline seeing as how I wasn’t ‘ill’ until 2014). My liver function results (as graphed) went slowly up and up since early summer 2016 and then absolutely rocketed up around the end of August, a few weeks before I was urgently admitted to hospital and kept in for eight weeks. Saw my normal rheumy consultant yesterday – she tracked me down and got a whole load of tests and cultures and xrays organised to check exactly what other hidden infected business is going on. Today, after being on the new ward, I saw The Three Musketeers (of previous post fame – rest of the Rheumy Team). I am personally worrying that my general blood test trends could be due to the vasculitis and not the medication, but have given up trying to raise anything like this with The Three Musketeers now and will just wait and see if I can see my specific Dr again tomorrow and if not, meh. Just die of exploding liver disease I suppose! All three – to varying extents to be fair! – were incredibly defensive and dismissive of me having gone to Addenbrookes and pooh poohed the fact that Addenbrookes hadn’t given me a diagnosis beyond undifferentiated small vessel vasculitis… The fact it was suspected CPAN and they couldn’t do the biopsy so that I didn’t bleed to death was loudly ignored… and they were also quite scathing about the fact I had an infection – ‘well that’s what comes of you being immunocompromised’ as if this was solely due to the rituximab and plasma exchange that I had when I was down there! If memory serves they had wanted to wipe me out with cyclophosphamide and I have quite clearly got an issue with these ulcers, what with it being the eighth one at least in two years! Really wish my Dr didn’t work at different clinics 😦 There is a lot to be said for having consistency at least and I know I was under a lot of stress and ill and tired etc., but I still can’t get past that day I was woken up to all three of them looming around my bed and how much bollocks one of them in particular told me about plasma exchange. I have been poking around at my blood tests too much anyway. There are many many many causes of stupid liver results; medications that could be doing it all stopped as of today (omeprazole taken off the cards!) and the fact I am itchy as hell since before xmas has been raised, loudly, several times. So if I die of itching or related exploding liver you can all happily blame my consultant. More bloods were done today so if I am still horribly deranged in a livery sense then maybe it will be time to become a complete pest and demand a liver scan…
I finally requested my hospital records in full 🙂 Sent of £10 cheque and am waiting for a horrible invoice for the paper copy haha! Will be worth it to go through and have a tidy. My GP records on Patient Access revealed that back in 2015 – without my knowledge! – I was smoking 15 cigs a day haha 😀 I may have maybe, once or twice, smoked a rolly at the weekend whilst drinking but I have never regularly smoked when not intoxicated and I honestly think I would puke at 15 😀 I sorted that out whilst on the phone, along with the lump in breast from a huge cyst I had had when I was about 11 being a ‘current issue’… and hearing loss being a current issue! It may be a teeny tiny problem, especially in right ear, but it is from being a premature baby with underdeveloped inner ear bitties and is in no way significant enough to be ‘hearing loss’ under current problems 😀 Unless you are near Dad. And then everyone has hearing loss. BECAUSE HE MUMBLES HIS WORDS VERY QUIETLY AND DOES NOT PROJECT HIS VOICE TO THE BACK SEAT OF THE CAR OR TO THE OTHER SIDE OF THE TABLE. Just sayin’…..
Anyway. Back nearer the beginning. I shat all over film night by firstly being on the phone to support group (Thanks!!!) and then 111… and then crying all over the place… and then going off to A&E. Then I’m in here the evening I was going to get to see one of my buddies who works stupidly long hours and I haven’t seen her properly for so long 😦 and was gonna spend today doing arty farty stuffs with Fave. I noticed a lot over holidays how much being tired and ill has changed the level of people and stuff I can handle. I don’t deal well with overlapping or clattery noises for example and being back in hospital, part of me wonders if that is what triggered that off so badly. The lady I was next to upstairs yesterday was… very tough. She appeared to have no short term memory basically and in the few hours before I moved downstairs must have asked me about 100 times what time it was, when someone was coming to take her to the toilet or to help her get dressed for the day or what day of the week it was. It was the evening for one thing and she was already dressed… and she had been to the loo so so many times as she had a urine infection that was making her THINK she needed to pee when she didn’t 😦 The other ladies were much quieter than my usual cohorts from last time, but she more than made up for it >.< I was definitely not long off pulling curtains round me and feigning severe hearing loss!!! Dad witnessed it as well which I think he found a bit tricky for some parts, as she was on top form for the half hour he was in with the repeated questions, but she also kept referring to him as my husband – which he DID enjoy as she was spooning out the compliments about how young and handsome he was haha!!
I have had – as well as being sodding knackered – a few very weepy emotional days. Bawled my eyes out a fair bit… Started crying with frustration for example because I dropped my purse then my stick trying to get cash out, in public with a queue… Because I just couldn’t coordinate my stick, my handbag (which was a cross body shoulder thing!!) AND then get some cash out. Apparently that is all just too much cooperation to expect from my limbs and my brain I need to sort that out, or practice at home haha – the same thing had happened trying to answer my mobile before Christmas and I’d started crying in anger on the pavement. Maybe I blame the bag?! It really is a weird relief knowing that it will have been partially caused by this infection, as although infection = bad, it was also not fun being so wiped out, sore, irritable and weepy and not knowing why!!
I don’t have to start work for a few weeks and will hopefully be allowed to do a phased return anyway, but am slightly concerned about when I will be allowed out of here, how many drugs, whether I have a deranged liver that will explode… So many questions!!! If I feel utterly naff still as well it will at least make it easier to have a proper think about care assessment and PIP forms and all that jazz. I am so on the fence about PIP – on a bad day I would defo qualify, but like most people I know with a disability I spend my entire life compensating, being in denial and hiding it as much as possible! The stress from the application process and almost inevitable tribunal process (NO ONE seems to get it first time around!) is likely to make the whole thing completely counterproductive Hell I am stressed even thinking about it, I can literally feel my blood pressure rising haha 😀 I had a few moopy nights anyway before realising I was infected up to the eyeballs again, just feeling a lot more disabled than normal, in the sense that I can’t drive at the moment, can’t walk very far, am in pain whether or not I use the stick but can’t manage without the stick as I feel so off-balance in case I put my foot down wrong or knock it, am so so unrelentingly tired, can’t handle lots of people and stuff, can’t deal with a job list because maybe half of one thing will be done in the whole day… Its making me sad as well realising how long this has been going on now. Christmas 2014 I already had my first infected toe, was knackered and sore and stiff all over (penis joke! Filth) and had no idea why at that point. By June 2015 I had had a few infected digital ulcers, got referred to rheumatology and started hydroxychloroquine after a few months of investigations. Christmas 2015 – guess what! Infected ulcer – in Fester! The same damned toe that has exploded this time! June 2016 – Meth and steroids! October 2016 – hospital for eight wonderful fun weeks! Christmas 2016 – The Era of Death Toe and by then it’d been about six months since I could comfortably drive longer than ten minutes or walk further than the end of the street. It has now been about a year and half since I started using a stick on a regular basis and about a year since it became my norm, even when going out on a night out. I’m absolutely shitting fed up of this shit. I’m lucky I have bloody wonderful friends or I would have been so disgustingly depressed and isolated. Its bad enough as it is, especially the isolation side of things!! – but I have at least managed to pretend to have a social life, even though I am now essentially pretty much housebound. Once the rituximab works (trying so damned hard to think of it as ‘once’ and ‘when’ and not ‘if’!!) I am going to frolick bloody hard and make a socialising nest in the park and I will love being around crowds again and multi-tasking again and it won’t knacker me out. I will also ban infections. I will further ban Donald Trump for he is an absolute twat and although I want to find him funny, it really really isn’t funny.
On a productive note, I have taken the first steps to changing my ‘local’ consultant – from one at a nearby town about 15 mins away to one about an hour and half away. The thought being that if I have any kind of incident, I can get seen at A&E locally still and this will hopefully not be a repeated situation for the whole of 2017! It has been run past my GP on the phone (appointment was today and I am incarcerated attached to an infected digit once again woo!) and she is happy enough as long as she has the support of new doc when blood tests go funny etc. as she was very quick to admit she knows very little about my condition and didn’t want me to be relying on her (paraphrasing!). We discussed also the sense in me having an ’emergency’ A&E pack, with this admission having been the perfect example/test scenario. Me crying and the A&E Dr asking for a second opinion/someone being available to provide that, was in a sense lucky, as not every Dr knows anything about vasculitis or is willing to take what a patient is saying seriously when there is no presentation of sepsis in the initial blood tests or main symptoms… E.g. I was not confused or slurring. felt queasy but wasn’t vomiting. If I was ‘normal’ I would have sent me home with antibiotics!!! But, that is kind of why I am losing a toe now, because my symptoms were not seen for what they were until it was too late. I would hazard a guess that it is fair to say A&E don’t actually give a crap who my Dr is if its the middle of the night at a weekend – the fact that my consultant happens to be based at this hospital is also irrelevant when she works at several different clinics during the week, a fact which was driven sharply home during my last admission and again today. So a folder confirming the main details, who to contact, the fact I don’t show a temp, the fact pred does absolutely sod all, will basically cover enough to be admitted and get cracking on with treatment wherever I am. Its been quite a long faffy decision for me, but now that I have had a phone chat with my GP about it, I feel a lot better and just need to get it sorted out with my consultant now if I see her tomorrow. I want to discuss it in person as I think NOT doing so will just make me feel like a coward afterwards and I don’t want any bad feelings or offence taken
Happier times… I have still been able to talk to my friends online, even though I am incarcerated! On my friend’s nudging (following her taking advice from a David Wolfe page that thoroughly confused us Ridiculous David Wolfe page – ‘mammals don’t get arthritis!’) I have tried standing upside down naked and rubbing a yorkie chocolate bar into my ears and can confirm that this does not cure vasculitis or associated arthritis type pain. In case you were wondering. Might be because I got confused and ate the yorkie. See Exposing Nutritional Quackery – facebook for more fun 😀
To reintroduce a snippet of everyone’s fave feature from my last lengthy hospitalisation, lets have a dose of Ward Life!
First, it is with an incredibly heavy heart that I have to report that J from previous posts, best ‘waving across the ward bay’ friend of my great great Auntie, owner of the imaginary fish stall, the lady continually wanting to break out of jail and involving me in all her break-out schemes, has sadly died 😦 She made my stay in hospital much more cheerful and we had several very lovely – if very strange – chats together.
I am now back in a bay with three other ladies – very spacious and calm down here compared to upstairs! – and of these three, only one is proving to be testing or ‘interesting’. The other two are chattery and although unwell and in one instance, in a lot of pain, not too miserable or grumpy. The other lady… Oh my 😀 She has quite some self-importance about her as well as a distinc lack of knowledge about reality – and really really likes telling us all off!! Including the nurses 😀 I dropped my stick last night and by then was so scared of her I froze, like someone in the presence of a hungry T-Rex, only to hear her saying quite angrily “People frittering about at all hours, well I hope they all die” – WHAAAAAT??? She talks in her sleep as well and some of what she comes out with is very dark and sinister. She doesn’t like the lights being turned off, goes ballistic if anyone else gets a cup of tea or food before her and before she asked me to help her sit up so she could go to the toilet – which I am not supposed to do, being a patient AND would find difficult to do as I can barely sit up myself! – and I was so scared that she would start yelling at me hehe – I was sweet-talking her for the few mins it took for someone answer my buzzer and thankfully I managed to get away with my incompetence. Discussing food helped I believe, I panicked, it was likely all food related conversation 😀 Once again though, like the lady upstairs I was next to, she doesn’t seem to acknowledge the existence of her buzzer! It is all very well them having one, but if they don’t want to use it or don’t remember they have it or what it is for… Then yep. Trying to stand up themselves or just literally yelling at everyone in earshot until their goal is accomplished seems to work! I saw another fall though yesterday 😦 Which was a good reminder for me not to get complacent and assume that someone who is trying to do something, SHOULD be doing something!
Right. Blogging over with for now. Taken ages again to type up what I wanted. It is bloody hard when you keep falling asleep at weird hours or have parents to talk to! 😀
Tomorrow if I am still in hospital, time for a film maybe. Eyes clearly allergic to the hospital as eyesight has gone naff again. Or its the…. Erm… No, none of my drugs have changed!!! Could be generally how I react to being ill?? Stupid drugs. I think my new game for 2017 is ‘drugs or disease?’ – all the cool kids are playing it!
***OK – I HONESTLY SHIT YOU NOT, SCARY LADY JUST MUMBLED AND THEN VERY VERY CLEARLY SAID “KILL KATH” IN HER SLEEP!!! AND THEN MADE A NOISE THAT WAS MAYBE EITHER A FART OR A BURP BUT SOUNDED LIKE THE ROAR OF A POSSESSED DEMON… I REALLY REALLY MAY BE DEAD BY THE TIME YOU ALL WAKE UP… I LOVE SOME OF YOU LOTS, SOME OF YOU A BIT AND A FEW OF YOU I WANT TO PUNCH FACIALLY. HAH YOU ALL THOUGHT I WAS NICE! OH AND I STILL WANT TURNING INTO A GLITTERY GLITTER BALL BOMB***