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In which Kath got to go home, the cat is DELIGHTED as no one else ever feeds her (apparently) and so far not been infected for over a week!! (Voldetoe is threatening it, but doesn’t have the balls just yet, as in the hospital again on Monday…)

So last post I was expecting to maybe be allowed to go home for a bit… That then got delayed a smidge, as I had a pretty bad weekend. I had a biopsy taken on the 9th, the day after the amputation and it hardly hurt at all to begin with and I was feeling pretty smug… and then it started to hurt like crap and get pretty bruised and inflamed. I’d share a picture, but that zoomed in, its pretty icky seeing my hip haha 😀 Weird, I can deal with the actual wound no problemo, but seeing my skin that close up grosses me out for some reason. Maybe I just have really gross flesh? Any ex-boyfriends care to weigh in?? I AM expecting to have a fairly exceptional scar, as it is a good 5cm long slice with quite a few stitches along it! If it were to heal without being fabulous, I think I will feel rather cheated. The bugger has been more painful than The Gap! More stitches… Easier place for me to pull them… So understandable, but I would have assumed an amputated digit would be more sore than having a chunk scooped out of you :/

 

Anyway, massive tangent there. I was feeling naff and what I was vaguely describing to ward staff and Docs as ‘infectedy’ so they gave me a few more days of observation until I was perked up again. It could very well have been all of the drugs from anaesthetic and chemo etc. still in my system walloping me; by Tuesday, my bloods were looking rather fabulous (although white count etc. royally flattened post chemo) and I got the all clear to go home Wednesday 😀 My appetite had come back as well, so I was managing to eat actual normal (some would say excessive) amounts of food again and blood pressure started behaving again… Although a single coffee managed to knock it from approx. 130/85 to 165/110!!! No coffee for me for a while then 😉 Mum did her SuperMum act again and came down to get me (so much driving!!!) and we road-tripped back up and I got to see my special little friend Mog again 😉 She cried she was so happy to see me. (She actually did, but probably because she was hungry).

Home meant checking still temp registered at local GP as being on warfarin now means very regular blood tests (three times a week until stabilised) to check how dodgy my blood is. The thought is currently that I have a coagulation problem as well as what is being dubbed livedoid vasculitis of some description. That in itself isn’t technically a diagnosis, it is more a description of what is going on with me. A bit of casual research reading medical papers and journal articles etc. (as I am prone to doing sometimes… Uni left me with serious dweeby research tendancies!) has resulted in me deciding I have the most mottled purple zebra markings in the universe. Of all the people in the world saying they have livedo reticularis (the fancy name for the mottling I get) no one has it quite so fantastically as I do 😀 Maybe shouldn’t be feeling smug about it, but it does explain why all of the Docs were calling me medically interesting (I laughed, said “you mean weird” and no one corrected me…) and one of the junior Docs came to see ‘me’ *my mottled skin* and said she had printed off some articles about it, which is always nice as it shows she still has curiosity about things she hasn’t encountered before 😀 The warfarin is GOING TO WORK anyway, so it is likely I won’t have quite so exciting mottling in future and it should also hopefully mean that my blood is thin enough to get down to my toes and fingers a little more effectively… So they will STOP GETTING ISCHAEMIC and therefore STOP TRYING TO DIE. Fester, Voldetoe… Stupid Finger… Are you listening??? I had an INR test on Friday anyway and by Friday afternoon everyone had had a chat and I got my next few doses, so the system worked 😉

Hmm… This is a largely cat based blog post haha – I have spent a very large chunk of time whilst at home feeling twitchy because I hadn’t updated this blog for a few days, reading (on the last of the Daughter of Smoke and Bone Trilogy – AWESOME!!) and talking to Mog.

Other Mog activities include apologising to her because I am not allowed to feed her as much as she needs, meowing at her constantly (which REALLY REALLY ANNOYS MUM hehehe), brushing her with the comb taped to a stick so she can’t eat me and playing ‘football’ with her with various colourful, sparkly, jingly ping pong balls. That largely involves someone kicking one to her whilst she then bats it back (almost always to your feet!) again and again and again… She is pretty fab at it (I said proudly, sounding like a demented cat owner…) and it is pretty good ‘physio’ for me, as it has meant moving around the kitchen without using my stick and giving everything a bit of a stretch. I was already managing a bit more walking (with stick) before I left the hospital, but my general strength is coming back pretty well in terms of energy as well. Somewhere I am comfy with, like the kitchen space here, I am happy enough moving around without my stick as I don’t feel nervous about falling, but I am still trying hard to walk ‘normally’ and failing as I keep automatically keeping my toes off the ground and all of my muscles and joints are still being generally sore and stiff ANYWAY which doesn’t help :/  Every couple of mornings (today being one) I have a really bad one and can barely move when I wake up, because my back feels like someone has pretzled it into a twist; but once I have stopped tensing at the pain, wanged down some drugs and loosened off a bit, I am normally a bit better by midday! Re drugs, I have managed to cut down a smidge on some of the painkillers and have my very own holiday drug box 😀 The rest are getting rescued when Dad next is down in Cumbria, as I will still be up here for a bit, so might as well use the time to sort out the ones I no longer have to take.

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So yep. I am here for a good few days. Monday I have to be back in hospital for a long day of reviews from various departments and a delicious bag of chemo… The second dose of cyclophosphamide. Kind of hoping to have at least the cryoglobulin result back by then, but the biopsy results will take AGES as I am pretty sure the chunk of Kath flesh was sent off to Newcastle for immunoflourescence tagging…?! Something fun like that. I think they tag the immunoglobulins so they can see what is happening, as well as investigating the damage to various layers of the blood vessel walls etc. Will find out more, as that is probably a load of nonsense 😀

Mum and Dad have both jumped on the ‘toe gap’ game wholeheartedly; Dad’s latest is that Death Toe has gone on his gap year… Mum and I spent a good few minutes deciding which piggy it was – the ‘stayed at home’ piggy, which sadly doesn’t lend itself as well to jokes as if it was the ‘gone to market’ piggy. Very mature. Mum also just pretended to be a hoover before, so that we could chase the cat out of the kitchen and open the door into the rest of the house, as the woodburner had the temp SO HIGH in the kitchen, I was nearly being sick 😀 She makes a spectacular hoover. MUM’S favourite toe/or lack of joke, is suggesting that I can now play that weird knife finger stabbing game thing you always see scary guys doing in shifty underground pubs… Or prisons… (In films I should add, I haven’t actually ever seen anyone other than a few drunk silly friends even NEARLY attempt it!). Only, I am to do it with a sock on and ‘miss’ to obvious general alarm and outcry. This discussed to the point where I was ‘planning’ it this morning whilst lying all pretzled up on morphine, trying to decide how much to scream when I stabbed the gap and what socks to wear 😀 😀

Speaking of socks, I can actually wear them again without them leaving an imprint in my ankles, as the ridiculous level of swelling/water retention has FINALLY gone down 😀 I have normal sized ankles again and you can once more see the general shape and tendons in my feet 😀 Assuming all goes well and I manage to stay out of hospital for longer than a week (not done very well at that in the last six months :/ ) I am going to TRY and go to a symposium conference event organised by Vasculitis UK at the start of March. It will involve a careful balance of getting there and back in one piece and NOT OVERDOING IT, but I am very excited to get to meet some more of the support group – AND – there is a formal dinner/ball in the evening so I am going to have a shower and wear a dress and feel like a human being for a change!! The last time I tried anything that involved socialising anywhere but a sofa will have been Solfest, which I spent a lot of crying because I couldn’t handle the pain from Death Toe… Even prior to that I had largely given up leaving the house, so this will be interesting to see how my energy levels manage, as talking to people etc. has also become something that saps my energy pretty bloody fast, let alone coordinating all of the getting there, hotel room and the physical staying awake/pain side of things 😀 A challenge that will hopefully not backfire. Wanting to start phasing work hours back in soon and it will be a pretty poor bloody start if I can’t manage a day sat in a seat and talking to people :/

Ahhh so much cat chat. As a final point, please once again have a think about being a good egg and donating some pennies to Leetle Broo and his team for the Edinburgh Marathon. They are fundraising on behalf of Vasculitis UK and are POSSIBLY going to do the run dressed as unicorns haha – I have endorsed that plan. Waiting to see if it happens 😉 Mega thanks to everyone who has already donated. Massively appreciated xxx

Leetle Bro running for Vasculitis UK – JustGiving link!

 

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Toe Death do us part! (Credit to Dad for the title… He started badgering me to get that one used over five months ago! Not so optimistic were you Dad ehh?!) *****NOT AS MANKY AS DEATH TOE BUT PIC OF DEATH SPACE? DEATH GAP? GHOST OF DEATH TOE??????******

Ok, so as you may be able to tell from my title, I don’t really know what to call the new void in my life 😀

******Personally, I don’t find this as difficult to look at as the infected and necrotic Death Toe we have all come to hate and loathe, but fair warning, I have wanged in a picture of the fairly fresh amputation wound a bit further down! It is all clean and tidy, but may make some of you feel a bit icked!!******

I would firstly like to tip my hat to the surgeons at Cumberland Infirmary, who stepped up and lopped off the toe that quite a few Docs had previously shied away from amputating… That being due to the seriously poor circulation in said toe and the rather frequent infections I end up with :/ It basically got to the point where it was looking pretty likely I had osteomyelitis and when the amount of pain I had been in for a YEAR was factored in, everyone agreed to just get rid of the little git!

I had literally JUST had five days of plasma exchange followed by the first dose of cyclophosphamide and was then advised it was chop day… Which meant no painkillers :/ It was a mixed blessing that Mum managed to see me before the operation – obviously lovely to see her! – but I had not had any painkillers that morning and was NOT a happy bunny. Death Toe was being a proper little git and I was curled up in a ball whimpering when she came in and had to sort my self out to have a chat with her! She did get to see the fab arrow moment below though 😀

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I was feeling pretty grim that morning anyway, so the actual pre-surgery prep/chat is a bit of a blur. I do remember getting the hideous – I mean FETCHING – hospital gown on, being wheeled down on my bed and being in a sort of pre-surgery waiting area… I mentioned how bad my circulation got when I was cold (getting a bit jittery about turning blue on the table!!) and was given a fabulous heated blanket which felt divine! Then I was wheeled in, and had an mask over my nose and mouth and was breathing in slowly whilst something was injected into the cannula already in my wrist… and then next moment I was waking up rather slowly and fuzzily in the recovery room! I had some totally crazy dreams that I cannot sort out if they came before, during or after… Very vivid and lucid, with incredibly detailed plots that felt like they went on for days!!  General anaesthetic from that point is pretty flippin neat!! But I really felt pretty shocking for at least 48 hours afterwards…

By that I mean when I came round, I remember seeing one of the ward nurses I knew and trying to smile at her, hearing something about my temp being 35 degrees again and realising I was absolutely frozen!! Then someone said something about heated blankets, one got laid over me and I must have grinned through the O2 mask, as she (the nurse) said “That’s cheered you up, hasn’t it!” and I dozed back off! Then I was zoning back in to being up on the ward again and realised quite how shocking my breathing was and feeling horribly feverish for what felt like a long time. I was very, very breathless, it was horrible. Reminded me of when I had pneumonia many years ago and I was getting tired just sitting up. I thankfully didn’t feel massively sick at all, but was asleep the vast majority of 48 hours, had no appetite at all and was utterly exhausted talking for more than a few seconds. Getting the five metres to the toilet (I was DETERMINED not to use a commode!!) was enough to absolutely wipe me out and someone was walking with me – NOT because of the amputation!! – but because I was so tired and dizzy I felt like I was going to fall over!

My first look at the toe was to take a bandaged pic and text parents to say all was ok before I zonked out again. I wasn’t sure how much of it was whatever local painkiller they popped in me before I came round at first, but was walking on it (with stick) pretty much straight away to the toilet and INSTANTLY was telling everyone it was less painful than before!

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Brace yourselves, next pic is a space where there was once a Death Toe…

Now obviously at first, everyone was probably assuming I was just quite doped up and I was offered oramorph if I wanted it, which before chop I had been using a fair wee bit as a regular top-up to be able to handle Death Toe. I quite quickly convinced everyone – including the surgical team! – that I wasn’t being a tough cookie however and it was actually massively less painful 😀  I will say with absolute sincerity that getting that sodding toe amputated is one of the best things that has happened to me in the last two years. For a year at least, Death Toe was ulcered, infected almost continually, then turned necrotic and was the acute cause of three hospitalisations totalling at least eleven weeks to date in the last six months! This may seem a bit weird, but I was actually laughing with the surgeons when they first unwrapped it and I had a look, as the gap was a lot bigger than I expected – and the lead surgeon said I had a fat toe 😀 I assume they don’t normally get thanked quite so sincerely for having chopped off someones toe 😀

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My first impression was how huge the space was for one toe… Second was that it is going to permanently look like my foot is telling the world to rock on haha 😀 Other wonderful comments have included the following: “It is a serious bit of space you’ve got – make a tiny model of a guy tightrope walking across it!” (hehe) Little Broo’s tattoo suggestion for my foot: “mind the gap” (probably too serious an infection risk haha!) Other tattoo suggestions included “It was not meant toe be” and “Digitally Remastered” 😀 I think absolute fave reaction has been Em, when I sent her the above pic on whatsapp and she eloquently replied with “Fucking hell! It’s like a scene off the walking dead…..RIP death toe” 😀 I love that lass!!

A huge amount of love and support as always from the Vasculitis UK facebook group… A lot of them have been following this blog, which was started AFTER Death Toe became a git (hence the name… Obviously…), but actually before it went necrotic. They were all being fabulously happy for me, which in itself is a massive boost when you are feeling naff. I also got to meet one of the gentlemen I have talked to for a long time in person, just before surgery and then afterwards for a groggy hello again! One of the loveliest things was the below pic being sent to me! One of the ladies and her students had a fabulous toemorial supper for “Nekro dakteelo” (Greek for Death Toe) as, as she explained, in Greece both life and death are celebrated with food 😀 Fabulous idea!! She had been reading this blog with them in their breaks, so from me to them, a massive hello and lots of love and thanks for the support xxx

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Anyway! I got a new neighbour on the ward yesterday… Annoying on many levels. The following is a bit personal and obviously, this lady is VERY unwell and the fact it irritated me so much is probably due to me feeling a bit sensitive about the topic rather than her being deserving of it. Also quite likely a level of me being sensitive to both her accent and lack of enunciation (eeesssshhh) and what I cannot help but assume is a consistently present level of stupidity. Haha ok, I am totally failing to be nice about her >.< Please please believe I am very sympathetic to be being unwell and have not been mean to her, but yes. She has been driving me insane since the second she was wheeled in! Firstly, I couldn’t help overhearing that she is a diabetic, who hasn’t checked her blood sugar levels or taken insulin for WEEKS/doesn’t eat anything sensible (the list of things she doesn’t like was insane and the only thing she could offer that she DID like was chicken…) because… She didn’t feel unwell. Until she collapsed and surprise, surprise her kidneys have failed. Her doctors are a thinly veiled appalled and I would go so far as to suggest angry; apparently she is consistently shit at monitoring and been warned many, many times. For someone who is personally desperate to avoid kidney damage, given that my disease seems to be going for my smallest blood vessels, I couldn’t help but find that kinda upsetting, seeing just how upset and frustrated her husband and doctors were. Each to their own?! Can I be angry at this justifiably, or is that a bit ethically dodgy?? On a more immediately understandable level, her space is also making two types of beeping… Fair enough this was initially first being noticed seriously at 11pm but last night it went on for over three hours (I finally managed to sleep) and appeared to be necessary as no one did  anything to make it shut up!! We had high pitched and constant: bip bip bip bip bip… and then the more musical, annoyingly spaced every seven seconds: bi-di-bip!! – and tv on (quietly but… cammaaaan lass!) – and light on, curtain wouldn’t fully close between us!!! Tonight – correction ALL DAY – we have had the tv on as well… I don’t watch it ever myself (unless on the sofa with Fave and Giant Beast) and I have decided to now hate her with all my tiny rage 😑 Been a while since I had an in-patient nemesis 😄 It feels good, gives me reason to keep fighting hahaha – I’M JOKING CALM DOWN – but seriously, if she falls asleep with that tv on again tonight I will smother her. It isn’t all grim. The 90 year old lady next to me is absolutely wonderful and spent the morning bantering again with the student nurses, making me laugh a huge amount and generally being fabulous all the time 🙂  Ooo the below were a little pressie I was sent from one of the support group as well 😀 Perfect for slipping in my mittens and reuseable 😀 (Thanks again xxxx)

 

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Today was a good day all round… I had a good chat with a few docs and my consultant and have been given the go ahead to drop to 10mg pred daily, start lowering the slow release morphine I have been on for at least five months and managed a good few short walks to the nurse desk and back 😀 With my stick still, but was aiming to get my foot flat on the floor through all the padded bandaging… First time in about a year, as I have been walking with my toes up to avoid the pain of contact, as the initial ulcer was on the bottom of the toe. I did manage, but had serious muscle twinges all the way up my leg, hip and back after a very short distance, so defo need to get some physio involvement and build it up slowly :/  The actual foot itself was way less sore than the resultant twangs!! ANYWAY. Also started warfarin again FINALLY and based on me being steady for the next few days on it (ie no unplanned incidents hehe) Docs are happy enough for me to maybe go home for few days to parents’ house 😀 Would then be back here for dose two of cyclophosphamide and a review with vascular, surgical and renal staff again… But I might get to see the sky :O

Finally!! My fabulous Little Broo and his equally fabulous friends are being very good eggs and doing some fundraising for Vasculitis UK. I have been doing the happy cry thing all day and getting some beautiful messages as a result of him sharing his justgiving page and cannot thank him and the team enough 🙂 Please have a click, a read and a share and go and visit the homepage for the charity. Any pennies you can spare would be appreciated and I cannot stress enough how much myself and the other members in the support group love and value the help and support we receive, on a daily basis in many cases!

Toetally Awesome – JustGiving page

 

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In which Kath and a very infected Death Toe & Fester are transferred to another hospital… Lots of poking and treatment commences! [Wed night to Monday night of the Second Incarceration 2017: Part 2!!] *****Horrible pictures, not safe for viewing by anyone*****

So… The Wed night saw my new consultant step in and arrange a transfer by patient transport ambulance. He offered to get me up to his hospital and I basically bit his hand off, as it nicely got me away from everything I was no longer very chuffed with. He was talking even in preliminary discussions about more aggressive treatment (not hard…. ooo I’m feeling bitchy apparently!!) and investigation, which at the point I was/am at is much preferable to fannying around and sacrificing more toes etc. on that altar… The lovely ambulance crew got me strapped onto a stretcher and then wrapped me up into some kind of Kath-bug, very snugly indeed. I dozed quite a lot on the journey and then got wheeled right up to a bed in a little shared room quite late at night. I got started on quite a hefty dose of a different, stronger iv antibiotic, which continues three times a day at least throughout this post… A lovely member of the ward night team got me settled in and I conked out pretty easily, having been absolutely shattered for days on end by that point.

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######Before I go any further, major viewing warning for further below; exposed flesh-of-Kath, bloody plex lines and infected digits!! You know you like it 😉  ########

Thursday I had a very busy morning, getting a femoral line put in… I already shared a pic of this on my Facebook page, but it is glorious enough to share again 😉 See below! I had some bloods taken out at that point and flasked for another cryoglobulin test… My Dr is still thinking it could possibly be cryo! It always fit in terms of symptoms and progression and a cryoglobulin test done earlier this month showed a weak postive – in that there was cryoprecipitates in the sample, but too little to identify what kind/test the sample properly. So there was a hefty blood sample taken out of the line just before it was capped… Result not yet in…

I then got wheeled down on my bed – through the WHOLE HOSPITAL 😀 – very dramatic!! – to the renal dialysis unit, where I got hooked up for day 1/5 of plasma exchange again – see resultant carnage above! I previously had this in December at Addenbrookes and the thought behind it is that my immune system is attacking something in my blood plasma (if it is cryo that I have, then it is attacking the cryoglobulins!) so plasma exchange not only gets rid of the antibodies attacking the bad guys but also stops my blood being all sludgey (which would be explained if it is cryo, by it being full of cryo blobs as they are big bastards when they fall out of solution (when I get colder)!). The lassies on the dialysis unit are lovely and got me settled in quite nicely; I was still so tired, I was completely out of it and asleep for most of of the time. Not sure how long… Maybe five hours? They removed about three litres of dodgy plasma! One cool thing I just learned (Monday night…) is that my tingly lip thing I get with the citra-lock they use to seal the lines between use is a known but quite unsual reaction – so that explains when they said I am “very symptomatic”!! I had told them as you are asked to mention anything weird and it was pretty bloody obvious – and has happened each time! – but didn’t realise it was so unusual!

Thursday eve I also got a visit from the parentals; they were doing a cross-over and meeting at the hospital, Dad coming up from down south and Mum down from Scotland – pretty good organising, but slightly dysfunctional 😀 😀 It was a bit of an emotional one. I had a chat with my new consultant whilst getting plasma exchange (hereafter plex!) and basically, the rituximab I had two infusions of in December isn’t an aggressive enough drug/hasn’t acted quickly enough really to be safe leaving by itself.

[Bit of a recap…] My disease (whatever it is) progessed too far without being checked before I started any treatment in the first place (my opinion, based on symptoms and time for recognition etc.) and then there was a serious load of faffing around when I was in hospital before Christmas. It is this bit that I am attempting to let go (both my own side of it and the part anyone else played), as they couldn’t give me the rituximab at that hospital – no funding for it, based on my diagnosis at that time. I COULD have said yes to cyclophosphamide at that time, but I was desperate to avoid it if possible, so I dug my heels in, made myself a pain in the arse and after weeks of sitting in agony watching my toe die, in a sobbing morphine mess, I got referred to Addenbroookes. Once there I got plasma exchange and they also sorted out rituximab for me, it being my preferred treatment and appropriate given the symptoms and my age/gender. So…. My toes kicking off twice so far this month is not necessarily to blame on the rituximab not working, but does mean that whatever benefit it is doing is not strong enough at the moment to be holding back the vasculitis/sludge blood.

Right!

######### Manky toe pics below!!! Scroll down fast to avoid 😉 ###########

The below is really pretty bad, both in terms of how fast it came on, it being a recurrent scenario and it being a horrible scepticemia risk as being immunocompromised on a few fronts, I basically have to go in asap and get iv antibiotics stat. This in itself can be quite hard to argue for, as I don’t present infection normally and was actually really quite bad before I realised as I don’t get a temperature, am used to them hurting a stupid amount anyway and was also just thinking my joints etc. hurt because the rituximab wasn’t working yet… Take note (if you can bear to look) at how the bit below the demarcation line is inflamed and infected now 😦 This is not good news and the vascular team came to see me and mri was sorted to look for osteomyelitis to see if it was choppy choppy time!

I’d say I am sorry for the above, but I’m not, I actually like making you all feel icked out 😉

So yep. Parents came and managed to converge and were here at the same time… With the ritux seen to be not working quickly enough, my Dr talked to my Drs at Addenbrookes and the consensus was that I really had to go for the cyclophosphamide now, or very seriously risk regretting not doing so.  This got lined up for today (Monday) and I am at this moment watching the nasty toxic stuff dripping into me, hopefully making a beeline for my immune system to do what it is supposed to do and bypassing my ovaries and my hair etc. etc. and all the other things chemo kills.

I think its all well and good me preaching education of the masses – particularly with respect to the emotional impact of these kinds of treatments – but I need to be prepared to practice what I preach 😉  The ovaries are the main one thats getting to me and the reason for the parent visit being a bit emotional.  They know only too well how long I fought to avoid cyclophosphamide in October and November – hell for the vast majority of six weeks! – and to now have no other options left is rather depressing to put it mildly. Before anyone pops up and suggests it, I can’t get eggs harvested as I am way too ill for the time that takes and having polycystic ovaries, the drugs required to get eggs ready to harvest would essentially put me at exciting risk of lots of cysts rupturing left, right and centre! If you google cyclophosphamide you will find it is not really first drug of choice for women my age for this reason. So I had a very quick cry with Mum and then we both told each other to get a grip, because as we decided previously, it isn’t very productive getting a cry on and then having to say bye – which we did, only about ten mins later, as one of the ward patients was having a serious anxiety attack at how many people were in the room and visitors were asked to adhere to the visiting times. So a good thing we didn’t get each other hyped into a drama 😉 I guess I will process it at some point! Just probably not whilst still in hospital.

Anyway. Something a bit different… 28th February is Rare Disease Day. This year to raise awareness, there is a photo challenge with the #rarediseaseday on instagram and twitter…

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A handful of us are taking part (on an as and when/can basis!) on the Vasculitis UK Facebook support group and the results have been both amusing and quite poignant. Me being me (and currently in hospital once again) I have been looking for entertainment in the one hour out of every 24 that I am both awake and fully concious 😛 It has so far proven quite amusing reading everyone else’s little snippits and insights into their day, but there have also been some brutally honest posts, where I get the feeling a few people are sharing things with their friends/family via their own pages that they normally don’t feel they can.

Friday, I was still absolutely buggered and started to be a bit upset again about the cyclophosphamide. I talked myself down a bit by shelving it for now and will revisit it later when I can handle it. Same has I have done with the toe 😀 I already even have a joke – ovaries are ovarated 😀 Cammaaaan… Thats pretty funny 😉  I’m basically looking at it along the lines of all of these Docs wouldn’t be saying it is now time, if it wasn’t time. It happens to other people all the time; statistically there was always a chance of it being me and it would be rather big headed to think it wasn’t ever going to be me! Other exciting (?) thing on Friday was the mri of the foot… Death Toe and Fester were being little shits still so it was NOT fun AT ALL – normally I absolutely love a good mri, consider myself something of an expert 😉 But when I have infected toes, it hurts a LOT. All the vibrating and moving around… The whole point is keeping as still as possible and I kept getting involuntary nerve twitches that made keeping still pretty impossible. That has been going on the last few days, noticed it a lot in plex today as it was waking me up every time I dozed off! After the mri I basically conked out and didn’t really properly wake up at all until Sunday haha – Saturday I didn’t do much except sleep. I had more plex and had an exciting moment that the nurses called a “waffy moment” which amused me, as baby cousins always called me “waffren”… But my BP dropped to 88/44 at one point which is quite excitingly low for me! I am normally about 125/88 as a rough average… and that is with a lot of medication bringing that down – sludge blood remember 😉 I was fine afterwards anyway, they think it was because I had food and it pulled all the blood to my stomach haha 😀 Toe dressing also got changed. That was enough for me, I went to sleep and didn’t bother with much else 😀

Sunday I had plex early on – I wacked on the last Harry Potter audiobook and was asleep again in minutes, having been awake maybe for an hour, which included having a slice of toast 😀 I slept for at least half of the treatment and when I woke up, although I looked like the below (eurghhhhhh!!!) I was a lot more awake than then last week or so – remained awake for the rest of the day with only minimal crashes!! Toe wasn’t as sore either as it had settled post dressing change and meant I could have less oramorph, so wasn’t as wacked out. Dad visited as well which was fab 🙂

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Note the stylish antibiotic bag necklace :O All the cool kids are wearing them…

Just had a little look on Patient Access to cancel the next few dressing appointments in advance… My discharge letter from admission through A&E is hilarious… In a sad, not really funny kind of way. It consists of about three lines. Maybe two sentences. Blah blah 28 year old woman blah “admitted with suspected cellulitis of her right foot…” Blah blah “We gave her IV antibiotics to cover for cellulitis, however her CRP is less than 5.” Yes, yes. CRP is the important thing to focus on.

Anyway… I think I just lost a bit of tomato or corned beef down my pj pants… :/

Today (Monday) was last day of plex. I started off with breaky nice and early to try avoid BP crash, but had another waffy moment anyway. No idea why! Managed to be a lot more awake again today. Line is staying in for a few days anyway, but once back up on the ward, had a big bag of saline through it and had the relatively innocuous, quick bag of cyclophosphamide. It comes with many pills and bits and bobs to protect your bladder and kidneys, stop you puking… So far no pukey! Woo! Mri scan was reviewed today and it is not very conclusive, but if there is osteomyelitis it is confined to the already dead bit of Death Toe. I will stay on antibiotics for who knows how long… Will be getting another biopsy to look further at possibilities such as CPAN and cryo (both really rather rare types of small vessel vasculitis) and anything else it could be… and may eventually have a bit more of a firm diagnosis one day. But! The exciting bit… Tomorrow, I am booked in for surgery and…

Death Toe is getting the chop 😀

This is the the last adventure of this particular Death Toe 😉  (I will keep writing, calm down, keep your panties on…) I am sorry to say I am sceptical of being able to say there will be no more adventures of Death Toe(s) but at least from this one, goodbye 😛 and from me (to DT), FUCK YOU, YOU PAINFUL NASTY LITTLE SHIT!!!

 

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Kath has icy cold hands and is scared to look at Death Toe :/ EDIT: Kath just looked. It isn’t Death Toe this time. Its Fester. AGAIN. FFS!!! FURTHER EDIT: It is BOTH! Kath is incarcerated for the second time in 2017. Kath is pissed off.

 

[warning – written over several days: please turn a blind eye to tense 😉 ]

“In the midst of winter, I found there was, within me, an invincible summer. And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger… something better, pushing right back.” Albert Camus

Featured Pic is an artwork for this post: Mikhail Georgievich Abakumov – ‘Screaming Spring’ Thank you to one of the support group members for drawing my/our attention to the quote and the artwork; it has tied in nicely with me finding the below link AND with someone else in the comment chain for that post describing their disease as follows: ‘today my invincible summer is a mild temperate summer day due to bronchial inflammation 😉 ‘ – I loved this idea 😀  Mine is an unseasonable torrential downpour, as witnessed from within the bowels of a terminally ill goose who ate too many rotten cabbages… Yes, I feel wonderful and chirpy.

Arthritis – Local weather info! (some other health conditions too)

Link with weather is something I have discussed a bit with people before, but I have always found that myself and Fave (RA!) have crappy joints at roughly the same time. The last few days – or at the point of starting this post – I was musing if I had flaring joints at the moment because the weather for my local town was showing ‘risk for arthritis pain’ :/ Turns out I was flaring because, once again, I am infected to shit. AGAIN. Cannot even tell you how frustrating this is.

I’ve been signed off work for longer, by Doctors who essentially think it is a bit ridiculous that I attempt to go back at the moment, when I have new ulcers popping up constantly. Part of the reasoning being that if I attempted to go back to work now and pushed my already struggling system I was more likely to end up flaring up or needing hospital treatment, or more time off in some form or another. So I have been keeping an eye out for infection. Or at least I was telling myself I was. Have spent the last few days being exceptionally tired – that kind of blurring into one long moment tired, where I honestly can’t tell you what I have actually done. I realised something was actually WRONG again Sunday morning, when for the second night running I slept on the sofa, which does occassionally help reset the aching a bit, as I must move around differently during the night. It also means I can get up more easily to get to painkillers – I can physically GET UP more easily as getting out of my bed requires getting off the bottom of it, which isn’t always manageable and some mornings takes a long time. Sunday morning I had a lot more pain than normal in my toes (Death Toe foot) and I had spent a lot of the ‘morning’ on the sofa, knowing I needed painkillers and food but unable to make myself stay awake long enough to get to them… I was then an absolute chicken and didn’t look at my foot for as long as possible. I was first going to do it after having some food. Then after having a shower. Then after… blah. Inside Friend came round. So couldn’t do it then as she utterly hates feet. So!  😉

Lucky for the drama cats amongst you, I am currently writing this in real time awaiting a call back from the out of hours Doc on the 111 service in the middle of the night. Ooooo UPDATE: another out of hours Dr coming to the house to investigate/presumably then take me into hospital?? Not sure if it works like that. FURTHER UPDATE: It doesn’t work like that. He basically looked at the big toe (an exploded gunky mess) by delicactely moving the dressing aside (had been put on deliberately so I could look without moving it all) and told me exactly what the three people on the line for NHS 111 had already told me/discussed. That it looked like an infection and I needed iv antibiotics. I like to think I can identify an infection by now…. Although yes, I took my sweet time in doing so. More what I was ringing 111 for was to confirm how to get admitted this time, as they can basically send notes of the conversation ahead and advise if you are to go to the out of hours desk or A&E; although every time so far, I have been asked to go to A&E.

The slightly alarming bit about all of this was that the local neighbourhood watch had told my Dad that a Doctor – specifically a Doctor, not even just ‘a strange man!! – had been round in the middle of the night (about 2am?) before I had even told my Dad I was in hospital/waiting to get admitted. I find the level of neighbourhood watch knowledge frankly creepy… I always have. Something that will be very delightful about the move to my house on the other side of town… Although I am quite sure they have neighbourhood watch over there 😦 Cannot underestimate their reach… Wasn’t really aware that anything particularly noisy had happened to alert them to the Doctor; I had even unlocked the door so they could let themself in and didn’t have to knock! Does this mean the neighbourhood watch will know if I get too ill one night and can’t actually alert someone through 111 for once?

So. Hindsight is a bitch. Having just re-read my last post (the one that took me two full weeks to write), I KNEW something was going on for the past two dressing changes, so that means I was suspecting it on the Tuesday, was still concerned and very tired/in a lot of pain on the Friday and had confirmation in the form of yellow gunk on the Sunday (a technical, medical term). Woopdeedoo for hindsight once again and the serious power of being an ostrich. On Sunday I had Inside Friend round, with the plan being to have some food and watch a film – and having someone else there made it more obvious to me how much my appetite had vanished and how zonked out I was – and how sore I was!! We had an incident as well. The Garlic Bread Incident. A frozen stick shot out of the bag from the freezer and nailed me right on the infected digits. Which made me go into the loud silence of someone suppressing some serious swearing, doubled over using the sofa arm to hold me up and going inwards to my carefully calm place. That was the point where I really should have then just bloody looked at the damned thing. Instead I didn’t, using the fact that Inside Friend hates feet as an excuse to put it off for a further few hours :/

I had a bloody good cry when I first saw it. Mainly an angry cry for the fact it was happening again as by that point I had had a LOT of oramorph. Yet another thing to add to the list of indicators something wasn’t right. I had gone from hardly having any oramorph to having some almost every time I had my other meds 😦 Now at this point I WAS going to put a picture of the toes. But it is honestly too bad… which anyone familiar with this blog may be startled by as I have shared some truly vile pictures of infected digits/my ill face 😉 These toes were really bad though and not cleaned up at all, fresh from dressing removal. Not good 😦 Or maybe I am just out of practice? It has been a while since any were oozing from several places!

So yeh I called 111 to sort out what I was doing. Then made the executive decision to sleep for a few hours on the sofa. During which time I had an insane dream; it should have been a good one! I was a medieval princess who started a skills contest with a number of eligible bachelors to prove that she was better than the annoying simpering wimps… and then just when the dream was getting more dramatic (a fencing match and already two princesses who got in the way dead…) I woke up with a start because the room started becoming several different sizes all at once and was smothering me. Turned out I was falling down the back of the sofa with a pillow over my face… Got myself a taxi into A&E and was triaged through the magical divide onto the main emergency ward pretty quickly.

So a nice point for two seconds (because a rant is forthcoming!) – I had had a tesco order due for the afternoon and started having a bit of a panic as I knew I wasn’t going to be in to receive it. So I looked at the cancellation policy and it said how to cancel but I was at that point about an hour outside of their cancel time 😦 I sent them a message through the contact form asking to redirect or at the worst, cancel the order and advising it was because I was in hospital and no one in to receive it… But was astounded to get an email back by 6am advising it had been cancelled and! The full order would be refunded and hopefully I would be feeling well again soon! They continue to be bloody brilliant all round for customer service and this made a crappy day a little bit brighter 🙂

So coming in wasn’t fun in the first place obviously, but it took a wee while to get a bed… I went via the normal day unit I go to for Rheumy reviews, where bloods were taken and I was fed and looked after until a bed was found for me. Then once I was admitted onto the ward I conked out pretty hard and fast as I was absolutely shattered. Someone… no one has admitted who yet! Told the Rheumy docs I was admitted again – so they all came to see me on rounds and basically gave me a lecture on having too many consultants. No “How are you feeling?” Or “Sorry to see you in again” – it was more, “This is the danger of having too many consultants” [this presumably in response to me being infected?! Or the fact that my on the ball Doc had already contacted them to say he knew I had been admitted and asking if I could have an MRI]. Essentially summarised by “You’re a smart girl, I’m sure you can understand that having consultants all over the country is dangerous, we’re saying it because we care about your care, you need to decide what is going to happen now you are admitted.” Erm…. Pretty sure I did a straight swap 😛  I said I knew another patient with vasculitis, for whom he shared care with Addenbrookes, and that this had influenced my decision – and was replied to with a “…or so he claims…” Ehhhh no you immature git, I know the patient! And! One of them said “a young Dr is he?” Like… what the actual fuck does that mean/difference would that make?? Wasn’t a happy bunny really, neither with the way the conversation went in terms of content and tone or with the basic fact that any of it was an issue in the first place. If you get admitted through A&E to your local hospital with an acute infection and a team happen to already know you, you don’t expect to be greeted with a pissing match on who is giving who instructions. Not when you have a rare, potentially very dangerous condition and have sought second opinions elsewhere.

I entirely understand that they don’t want responsibility for treatment choices someone else is making, but there were several comments made NOT getting repeated here that had me having flashbacks to morphine limbo in Oct/Nov… Wondering if I am mishearing as why on earth would x,y,z be relevant. Yes, it is maybe immature or silly of me to repeat so much of this here. But I don’t think that this is acceptable and want to make it a little more widely known WHY I requested to go to Addenbrookes so persistently in the first place. If my consultant is asking formally for his patient to be treat in a certain manner, crack on! Comments were made within minutes of the conversation starting about transferring me. Sadly that didn’t scare me as they maybe hoped, but instead made hope blossom inside me 😉

I waited till they had gone to have an angry cry. I knew it was going to be a tough first encounter, but I just didnt think it would be so soon.

ANYWAY. Happy ward stories… A new woman came lon the second morning who had a stinking attitude problem. I did eventually confirm through a chat that she had basically never been in hospital in her life – and you could tell. The fact she had not brought in any clothes or stuff to do or wash with etc. etc. was treat like the fault of the staff. Not receiving her food or her medication when she wanted it was outrageous – regardless of whether or not she had asked anyone already or if the obviously very busy ward staff were helping someone else first. She was clearly in a bit of shock at being told she would have to stay in for a while and that she was also going to have to amend her lifestyle for a while… But both of those were short term problems. She was surrounded by very ill people, three of us being considerably younger, considerably more ill and all of us with conditions that were requiring intensive drug treatment and were lifelong. It therefore felt wonderful when she got busted smoking in the toilets 😀 she did however still complain about not being allowed to do THAT! Pretty sure that is an obvious one. Many signs for example. Usually the case, no matter what hospital you are in 😉 The bit that particularly riled myself and another younger lass though (both furious on behalf of the other) was when she told us “please can you not have such a depressing, gloomy conversation? Not all of us are familiar with all of the medication and living in hospital!” – to two young women, both clearly delighted to have someone else who was a) their age, b) familiar with medical terminology and therefore properly able to have a full conversation at a point when we were both ill and c) both in a lot of pain and expressing how hard it is being admitted with a lifelong condition but an acute episode. She skipped many people straight to the top of my ‘kill list’.

Anyhoo; emails were sent, phone calls were made and I found myself on the Wednesday night wrapped within an inch of my life in blankets, strapped to a stretcher and on my way up to consultant’s hospital in the back of an ambulance 😀 Yay!!!

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TBC!!!

 

 

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In which Kath nudges a new low… (or high – depending what blood test you are talking about!) Stressed oot of her tree >.< and we have a facist cheeto as president. Wonderful!

 

If only we DID have a pipe smoking rabbit 😦  …..Or we COULD! If he would accept the job. Bunny?!

Yesterday I hit a new behavioural low; I googled ‘hogwarts grades’ and rewound the Half-Blood Prince to check what Harry got for his O.W.L’s  so that I could judge him accordingly 😀 Yes, I am disappointed in myself. This is another post I am typing over many days in small chunks, [officially at the two week point now!] I basically am sleeping too much and when I am awake have other vital things like eating or toe dressing changes that sadly have to come first 😦

Several days in early January were (as per previous posts) spent in hospital AGAIN – a Sunday night, very late, to the following Thursday afternoon. It had only been a few days since I came back down south from Scotland, before I’d managed to get myself admitted through A&E. It interrupted a planned night seeing my friends for the first time in weeks, with the film already started whilst I was waiting for the call handlers for NHS 111 to call me back. When I had spoken to someone who confirmed that yes, I did need to go to A&E and get admitted urgently and start iv antibiotics, I thanked them for their time automatically, hung up the phone and burst into tears. I had Fave and Inside Friend and a few others (including massive beast dog) with me and was consoled and petted and reminded that I had survived the last incarceration – and that going in then and getting iv antibiotics was vastly superior as a plan to going in a few days later, very ill and being kept in for years/losing a toe. It helped a little. Dad was staying so was able to drive me in and keep me company, until I had passed through the magic A&E assessment ‘admitted’ wall.

So as per the previous post, I had a few days of iv antibiotics – four bags a day, along with some different stomach protector drugs (because of the deplorable liver function tests) and finally some anti-histamines… By the time of the last post, the rash was calming, presumably as I started taking four anti-histamines a day. My skin remains dry and sore and peeling and just generally crap and making me super grumpy 😦 Not a clue anyway. It seems to be calming down… If it is the rituximab as thought, the plan will be to monitor me very closely if I get another dose of it, in case I have a more immediate reaction during infusion.

I had a really nice surprise whilst I was in hospital this time – not a sentence people will utter very often and honestly the last thing I expected to say! My fave med students from last time came round the ward 😀 They were hunting for people to do a practical with and upon seeing me, came over and we had a lovely catch up and then I had a break to go and get a shower and become a bit more human. You don’t really want people doing a physical exam of any sort if you haven’t had a shower for 48 hours! 😀  These were the two (minus one of their buddies) who spent quite a bit of time with me last time and ended up doing one of their presentations on my case before I was discharged – they did very well 😀 I came back all clean and shiny, their supervisor appeared and we did a practical, involving poking my face and arms with cotton wool and teeny tiny little pins to check how sensitive my skin was… Then an exam of my abdomen, prodding on various organs, presumably to check if my liver etc. was rock hard or exploding. It was all quite fun! Seeing them was the high point of my time in there; I was very upset at being incarcerated again, it felt like I had only been out for days. I really really didn’t want to get admitted, but at the same time fought my corner to be admitted, because I knew it was the only way to get the iv antibiotics I needed. It felt so weird being in that position.  The second doctor who saw me and confirmed that this was very necessary was key in making it happen and took the pressure off me feeling like I was demanding it, so after that I went back to being sad about being back in hospital. New Doc has confirmed that I will be able to get some kind of alert on the A&E system to say I have a chronic illness, am immunosuppressed, don’t present normally with infections – e.g. don’t show a temperature 😀 My toe was infected to high hell and because it wasn’t showing in my bloods and my temp was 36.4 (I think!) I was going to be discharged. Stupid temp crap stupidity….

I didn’t see my own consultant when I was discharged; I started off trying to check some details (e.g. clarify what was meant by my CRP and liver function tests reducing, as I still can’t see them online yet) but was met with alarm and bewilderment… Copy in Addenbrookes?? Who is Addenbrookes?? Ehhh… Either means my notes don’t show their involvement at at all or he hadn’t looked at my notes! [At this point in the typing, Kath fell asleep on her desk and made herself decant to the sofa for a proper nap – she had a phone call due in 20 mins with the independent medical advisers who would be putting their recommendations to work and she suspected it would be wise that she didn’t conk out mid-sentence…] [EDIT: May have been better if she HAD conked out mid-sentence… Now I am in a stupid situation where they reckon I am good to go back to work, I am feeling utterly terrible and my doctors are all saying that going back to work is a stupid idea 😦 ]

I spent the next few days feeling considerably better than before hospital admission (hence a rather too optimistic phone interview with medical advisers!!) but my friends all simultaneously managed to get some kind of horrible puking death plague or felt crappy so they were all quarantined (or at least in my case!) and I didn’t see many humans :/ I DID see my amazing baby cousin! My auntie took me to CHOC to get emergency MST as I managed to run out and didn’t fancy going into morphine withdrawal over the weekend! On the way back from the hospital, we detoured to Pets at Home so my baby cousin could see the rabbits and fish – he is two and a bit and is very fond of my own fish (see below spotty guy! Either Mario or Marcus, not sure…) so we thought he would enjoy it 😉 He said “fush! fush! fush!!” an awful lot 😀 Like a cheap version of a day out at the aquarium hehe!!

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Whilst I was feeling better, I did a massive drug sort for the next two weeks – I was discharged with a slightly different brand of my usual slow release morphine, so I got to see the super pretty pink and yellow pills again 😀

So many appointments. So so many. Between formal work things, GP appointments, toe dressing changes and doctor appointments at the hospital, I have had one or two things a day since discharged back in December, excepting the two weeks I was in Scotland, when I had a blissful period of nothing to worry about attending or missing. Being in hospital again at the start of the month was intensely frustrating, as I had to cancel and rearrange various things, with absolutely no idea how long I was going to be in there 😦 One of these was a meeting with Adult Social Care, which I still need to rearrange.  I started counselling again at MIND and THIS had to be rearranged. Currently managed to get myself an hour slot once a week and it seems to have unlocked a load of stuff I was trying not to think about or acknowledge, as I have basically spent the last week crying a lot. Unless that is just being really tired and ill and generally crap?

Fave had a properly wonderful phrase she used today, about feeling like a “non-human” – when everything is snowballing out of control and you can’t handle even basic ‘life-ing’. That basically sums up how I am feeling at the moment 😦 Pretty much all I can handle is waking up, eating, drugs and more sleeping. The appointments are so knackering and toe dressings so painful at the moment. More ulcers are appearing. Yes, more ulcers. More potential shitty infections. The blood tests from last appointment show a wonderful mix of my liver function tests still being crap – so much for them having improved when I was being discharged!! – and my kidneys now being shitty as well. GFR… ACR… Also very anaemic which I am not entirely sure how to fix, but presumably my GP will know tomorrow! Explains the horrific level of fatigue anyway. No signs of infections on the toes, although all these crappy ulcers keep appearing, but I also have raised white count and neutrophils :/ infection or inflammation?! Something… Hmmm.

Details for the ones that are a bit dodgy anyway for anyone who is interested/knows what they are looking at! HbA1c (long term average blood sugar check) was good, so they really need to accept not diabetic by now!! 😀 I am basically on constant infection stand-by now and depending on what everyone else thinks (e.g. Addenbrookes and GP) may well need to go in and get poked at anyway. Liver function tests have been crap since the start of last summer, increasingly so since September. Kidneys – I don’t know.

ACR: 60.3 mg/mmol!! (norm is <2.9) Estimated GFR: 70 mL/min (norm is 90-120) (up from 60 in September)

Good effort Kath kidneys!

ALT: 90 U/L (norm is <40) (up from 77 in Dec)

GGT: 120 U/L (norm is <45) (down from 128 in Dec)

Good effort Kath liver!

Haematocrit sorted itself out by a few percentage points, back down to within the guide limits from December…

White Cell Count: 14.6 10*9/L (norm being 4.0-11.0) (up from 10.3 at the end of September, not long before I was admitted to hospital)

Neutrophils: 13.1 10*9/L (norm being 1.8-7.5) (up from 6.5 in September)

Iron: 6 umol/L (norm is 11-29) Transferrin Saturation: 8% (norm is 15-50)

CRP down though! 5 mg/L (down from 9 in September)

So yep, blood tests are obviously not everything, but iron in particular explains possibly why quite so bloody tired at the moment. Stupid blood tests. Confirmed in writing anyway that work is a stupid plan at the moment until I stabilise. Not least because everyone is basically waiting for me to go into hospital with another exploding toe…

I got myself the below notebooks/memo pads to help me keep track of everything… They amuse me AND fulfil my need to note things down continually and obsessively. This side of things has definitely got worse; I guess it goes hand in hand with how many appointments are coming through! I can’t stop obsessing over missing something or how I am getting to each one. Although wonderfully I have had confirmation I can use the Patient Transport Service. This is sadly essential; the warfarin I need won’t get administered at the local GP surgery as I am too complex, on too many drugs, too likely to be hospitalised etc. and the INR practice nurses don’t think they can monitor me appropriately. This means I need to go to the hospital anti-coagulation clinic every two or three days!!! I can’t drive… It is during the day so everyone else is working… HOW CRAP IS THAT? 😦 Up steps Patient Transport Service and saves the day. I count as pathetic enough to qualify for help 😉 Woo hoo!

 

Newest thing the rituximab – or just generally being ill – has thrown back at me is my hair falling out again… The fact  I have always been so nice and careful with mine for my entire life, using no hair dye, straighteners, not even a haur dryer… Makes it feel like an extra kick in the teeth. We aren’t talking delicate little strands coming out, its loads everytime I wash it or even touch it now 😣

ANYway. This being the most generally shit I have felt in a long time (when you factor in emotionally, as I am a few horrific nerve stabbings away from Death Toe death point…) I thought it was a good time to re-read the below and have a think about the general message. Conserving spoons has become so horribly important. Wake up, need to take drugs, get down stairs – or off sofa… Banana or some yog as the easiest option, hot water to loosen throat and ten painkillers. Then sofa and set an alarm and collapse again. Then wake in a panic thinking missing appointment 😀 Sometimes a shower if it has been a few days… 😉 Toe dressings are twice a week at present. Most unpleasant. Not sure if I am just more tired or if there is some infection going on I have yet to see, but Death Toe is back to the point of making me cry with pain now when the dressing is being changed twice weekly 😦  I knew it was going to change a few times in the falling off process, but didn’t expect it to go back to November levels 😦

The Spoon Theory  This is something I make myself read now and then just to remind myself of that amazing moment when I first encountered a written interpretation of what I was feeling every day – a feeling I was struggling to explain to anyone. At the time it seemed like only Fave understood (dramatic much?!) and she me this as a way of helping me wrap my head around it. About two years ago now :/

Oh jeeeeeez Dumbledore just got killed… Don’t know if I can handle this in the middle of the night!!!

[FYI… Discovered the best thing in the entire universe last week. Homemade (slightly dodgy) scotch pancakes, spread with biscuit spread… (essentially brown sugar that tastes a little bit like a crunchy rich tea). It is very wonderful. I made a batch of the batter and left it in the fridge for making a pancake whenever I needed food. You are welcome in advance. Please apologise on my behalf to your dentist.]

Finally. THIS 😀 Peter Digs A Den Wonderful children’s book by two marvellous Cumbrians, coming soon!! Click and like the page pleeeeease 😀

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Kath goes on a marvellous adventure to top off yet another week of medical shit and Death Toe gets another new friend.

So I had another post I was working on in ten min chunks for the last… week now urgh! – but honestly being awake (and not in a hospital) long enough to type has proved difficult… It essentially went blah blah medical shit blah blah hospital blah blah toe still falling off. Much like this one, except today has a surprise fun twist which is in real time. So has added drama n stuff.

Today I woke at 8ish, had a shower, banana, some drugs… Potted the rest and went to get Death Toe’s dressing changed. A now twice weekly fun event on my schedule. Until the little shit falls off anyway. But! Never fear! Someone will surely die to take his place 😮 For as well as Fester (on RIGHT big toe), today I have noticed ‘annoying new guy’ on LEFT big toe! An exact mirror image of Fester, except currently minus the infection. I’m sure Fester can give him tips. Could call him Gomez I suppose? I cannot express how fecking annoying it is to have your own toes persistently try and die for NO REASON. STOP. IT.

Theeeeen… Went to train station. A ten min walk that took me a panicked limpy 50 mins. In a LOT of pain as freshly changed dressing. And if I had given in and stopped for just one more swearing breather I would have missed it as I was only just in time by a minute. That is the furthest I’ve walked since September and it was horrible and Death Toe has been screaming at me all damned day as a result. Got the train (admirably well) to Carlisle, via Lancaster. Then got a taxi to hospital. Had a very reassuring lovely first meeting with a consultant that essentially went blah blah medical shit blah blah, the upshot being I’m a complete mess but he is looking into it. Had about a gazillion blood tests done anyway and got to flash all the stupid rash, ulcers, mottled stupid twatting skin… I asked about work and he was pretty amazed… Turns out just because your fit note expires doesn’t mean your consultant (or for that matter GP) were/are thinking you should be at work. Major duh moment for me 😦

Got taxi back to train feeling very tired but like I had achieved. Carlisle to Lancaster went well. Had call from GP and discussed above. As well as re work, seen as too much of an infection/hospitalisation risk for INR nurses to agree to monitor me at GPs. Despite Addenbrookes re requesting. So until I stabilise got to go to hospital several times a week 😣 Cannot even begin to describe how frustrating that is re travel organisation. I can’t drive right now and the GP surgery is about 100m away!! But also so horribly depressing, fresh on top of finding Gomez this morning, to know that a panel of practice nurses and my GP that met today all think I’m doomed to imminent recurrent infections right now, until this sodding drug starts working.

Speaking of which… Between him and dermatologist friend, horrible itchy rash bastard has been determined by consultant to almost certainly be an allergic response to the ritux 😕 Not a BAD one by any means – and since doubling the antihistamines a few days ago it is a LOT better… but it was super itchy and sore and I’ll need monitoring in case next dose does anything worse!! Gross pic for y’all without a toe for once. When I get signal anyway. Imagine you have fallen into the itchiest nettle bed ever and it is all over your skin and under your skin and inside your BRAIN and probably also in your frikkin eyes. Or it is at least around your eyes. So yep. Serious drugs are not fun, don’t get sick kids. OW!

Had a wait at Lancaster. Got next train. Started reading awesome book with beautiful tasting words and phrases – Daughter of Smoke and Bone – its only taken me… a few months to actually be able to read!! The focussing thing seems to have pretty much sorted itself, as confirmed as well two days ago by opthalmologist – compared to eye test done in November I bossed it! Although still not back to normal :/ I am blaming the pred defo.

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…and fell asleep. Woke up to announcement, confirmed rapidly by other passengers… arriving in Carlisle, next and final stop will be Glasgow.

SO.

CONFUSED.

Got off train (in a hurry!).

Not sure how I did this. Have had to redo the entire sodding journey from Carlisle to Lancaster. Covered it four times now today!! JUST back home now. Two and a half hours later than planned. Shout out to Dad of Fave who came and picked me up, two and a half hours later than planned. What a hero!

Have a giggle on me anyway. We bloody well all need one with that absolute atrocity of a buffoon inaugurated today!

[Featured pic was going to be a spotted fish but now it is my disgusted face as the man in front of me for several stops Carlisle to Lancaster (second time) had the plague and kept coughing, so now I will have the plague and I will die because I have no functioning immune system. Shame I don’t owe anyone nasty any money]

[Really, in all of the lovely stories in the world, me making an arse of my return journey would have served a higher purpose… and because I was reading lovely words, I was half wondering if I would have a magical moment on the fated second train journey and meet my soulmate… Or find a million quid… Or a box of kittens. Sadly, I can confirm that not a single one of those things has happened]

 

 

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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!!!