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Kath has lots of purple piggies, snake-fish, even more drugs and exciting appointments!

Soooo last update was early September, when I was freshly on a stink load of steroids and energy levels were confusing things. Now down to 25mg (from a giddy high of 60mg!) and really this is basically because it doesn’t do an awful lot for me, other than make me have weird sleeping habits and Eat. All. Of. The. Food. Not even joking, it is scary. Reason for that wack up was because Fester (big toe) tried to be dead again, but the steroids and a hefty wack of antibiotics sorted him out and he remains cold and mottled and thankfully not gone to far over to the dark side…

Week later, my stupid fingers started kicking off, with teensy weensy baby ulcer spots, so same story, stayed on high dose steroids and agreed with Consultant that the daily dose of MMF would get increased too. This is the one I call chemo-lite – used as anti-rejection meds for people following transplants, as well as being a daily form of chemo given to people with auto-immune conditions. I tolerate it pretty well, not too many side effects at all, so decision was made to bump that up from 500mg twice a day to 750mg twice a day and still ticking 😉 If anything, none of it seems to be exciting enough as my stupid white count and neutrophils are STILL climbing, from the high early September – this was blamed on increased steroid dose, but now on lower dose and still going up. Constantly looking for infections or ulcers forming, but only other thing I guess it is reflecting is my immune system having fun deciding my blood vessels are all the enemy. Over enthusiastic little git… You would think the stupendous amount of drugs I am taking to flatten my immune system would be doing something. Can you become immune to immunosuppressants??? Anyway, basically all my fingers are now being stupid and freezing cold and I am back to doing everything in mittens except going to the toilet, washing my hands and eating. Mittens = life!

My hip, following the potential pyoderma gangrenosum query had a month of strong steroid cream, as well as the timing of the increased steroids and the antibiotics, so if it WAS pyoderma, it was either going to be very happy and heal, or get worse anyway and form a crater of death. Instead it basically didn’t change at all. For a month. That actually takes some effort. I have had the same open wound now for… Eight months! If you can’t win, at least be proud of sucking so much yeh??

Whilst newly on all the increased steroids and MMF, it was time for the camping party that saw me sitting on the floor with everyone swearing at Death Toe a year ago, in my rather iconic awesome socks. I was verrrrrry apprehensive, not least being a bit wired on the steroids and aware I was not exactly very resistant to the cold… I had epic assistance as per usual from everyone and tried a new sleeping ON the duvet instead of UNDER the duvet thing in the tent and it was SO MUCH WARMER! My sleeping bag finally died, but that is what Christmas is for. I am an only child this year for Christmas as well, as everyone else is sodding off to the other side of the world, so this means I get three times as many presents. True story!

Anyway, I spent a lot of the time in the above fancy dinosaur hat, despite hating both orange and dinosaurs, so bit confused about why that happened… But I also fed blackberries to giant fish, sat around a campfire and had ALCOHOL!!! For the first time since Solfest last year, when I was essentially balancing painkillers and alcohol and completely failing to block out the toe… When you are not in ridiculous pain, turns out alcohol still gets you a bit drunk 😉 It was fun being silly, but although my toes were not dying, I was still sore as duck with all the moving and joy. Sleeping in tents also not recommended for being able to move the next day 😀 WORTH IT. No fingers or toes fell off anyway, which is more than I can say for last year. Also resisted the lake, although not as tempting with it absolutely lashing it down the whole weekend.

Very end of September I had the joy of a trip up to Carlisle, to the same ward that I lived on for two weeks in February. Same ward and staff who sorted out plex round two, cyclophosphamide (urgh) and the destruction of Death Toe (yay!) – some very good eggs! The plan was to do another dose of rituximab; my Consultant had a chat to Addenbrookes to check they didn’t have any other exciting plans and they had confirmed rituximab was best plan. The cyclophosphamide was originally used AFTER the first two doses of rituximab, because I was too unwell and rituximab takes too long to become effective and is a bit too gentle… I have now had four infusions of it and honestly, compared to the cyclophosphamide it is a piece of cake. Doesn’t make me feel sick, just a bit more tired than normal and the drugs they give you with it (hydrocortisone urgh) make me absolutely spiked. No exciting skin rash reaction either last time in April or this time, so that was maybe a one off. I got very used to having awful veins after all the tests and cannulas last year, so warned the doctor I was a nightmare; she got my arm super pumped up and maybe got a bit too enthusiastic, as I bled all over the procedure room and it was hilarious! I have been binge watching Dexter a lot at the moment and it was exactly like one of the more exciting crime scenes, with puddles of blood and smear patterns and fingerprints… Maybe not as funny for her as she had to clean it up because I was plugged in, but it made me giggle. Other than that I basically slept the whole six odd hours curled up in the chair, except for vaguely waking up every 15 mins to get my blood pressure, temp and pulse checked to make sure I wasn’t dead. Very comfy chair! The train there and back went a bit more smoothly this time too – I had epic coffee and cake for breakfast when I got to Carlisle, courtesy of my welcome committee/taxi driver 😉 Afterwards I was sleepy and dozy, but it wasn’t too late as I bossed the actual infusion, so made it to the train in one bit… Last time I had ended up getting on the train in Carlisle to go home, and somehow got off the train in Carlisle… It was very confusing and I was a bit scared of it happening again, but I did it successfully this time!!

FYI this handsome little fella is my new cat godson Ludo. He is the best cat ever, except for all the cats I am going to have and obviously except Mog, but he is pretty awesome and I am growing him cat grass because… Whilst in animal waffle section of this update, I also decided to get a new fish tank a while back because the old one broke suddenly and I didn’t want to watch all my fish freeze/suffocate to death. This obviously then led to more fish. Being a bigger tank, it has kept leading to more fish, in slow steady fishy increments. The newest are these two awesome golden loaches, called Boggis and Bunce (the yellow snakey guys below). They are eating SO MUCH so my fish food costs have basically doubled from a few pence a week to maybe… 5p a week? Slightly creepier than anticipated; I always swore I wouldn’t get any albino fish and they are just a leeeeetle bit pale and red eyed for my liking, but they have oodles of sass, so have forgiven them. They also have very cool moustache faces!

So ja… Yesterday I had a day off work for a trip back up to Whitehaven to see my Consultant. This was for a routine outpatient follow up, planned before my fingers started kicking off and before the rituximab, so I knew already from many email chains that my Doc had been looking into some new ideas. Getting there was fun – there is basically one main road that goes up the west coast of Cumbria and we had some pretty heavy rain and flooding on Wednesday… So one of the bridges was closed. This led to an hour delay, as I had to take a funky diversion and then timed it perfectly to hit the special pointless uphill standstill queue at Egremont that apparently happens every day. My Doc bumped me to the end of the clinic, but by the time I got there and parked, over an hour late for the appointment, I was a shaky mess of sore muscles and brain mush. My bp was surprisingly not too ridiculous, I was only 145/99!! My hands were shaking though which was quite funny when trying to show off my purple fingers and having to excuse the trembles. Fun new idea that is being investigated is systemic sclerosis. I have had tests before for more general idea of scleroderma, as it would nicely explain the digital ulcers, but was DA DA DAAA! negative… So new batch of bloods have been taken that should pick up a wider range of markers. I don’t exactly fit the typical classic symptoms, but I don’t even give a fig anymore, I just want a bloody name. I keep going through phases of thinking I am being a drama queen and imagining it all and then I have a bad day and can’t move much, or think actually, my fingers are trying to die, or look over old blog posts and remember my toes dying… And yep, my body is trying to kill itself, so a name for the particular flavour of idiocy would be nice. It isn’t likely to change the treatment plan much, but it would be a bit of emotional closure! Given things are trying to do a repeat process anyway, also was decided to go ahead and pretend it is systemic sclerosis for now and change the pentoxyfilline I have been on three times a day since… March? to Sildenafil…

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This is basically the whole reason for this blog update. I am still vastly amused and got to go and pick it up today. Sildenafil…

IS

BASICALLY

THE

PROPER

NAME

FOR

VIAGRA!!!!!

Very amused. Was a bit irked when picking it up today though, as although my Consultant had already written me the prescription, my GP confirmed that she could NOT prescribe it for me. It is a restricted drug, UNLESS it is for men with erectile dysfunction in which case she can write prescriptions all day… So my fingers falling off don’t warrant a drug that has very clear rationale behind the use of it. Not to suggest it is widely used, but systemic sclerosis is not exactly super common and honestly, I don’t exactly full fit the profile. Fun drug paper below anyway for anyone who thinks I am making up crap about viagra potentially keeping my fingers attached…

Paper on management of systemic sclerosis for anyone who cares!

So just to confirm for everyone wondering, I will obviously let you know if I suddenly develop an erection that doesn’t go away, but the main side effects I am likely to experience are the usual crap that comes with basically every drug I am on already – like headaches, getting dizzy, changes in bp, turning pink… Just hoping it doesn’t get as exciting as the horrid iloprost did, as I cannot manage a permanent migraine. No amount of fingers are worth that being my life. FYI I am joking about the erection. If you don’t mind your search history looking a bit weird, research how viagra works. I am not going to suddenly grow a penis either. Or develop uncontrollable sexual urges. Sorry!

Getting home after the Consultant appointment was even more weird. I was a bit spaced out so crashed out in the car park for 20 mins, then set off, knowing I would have a diversion at some point. I do not know what happened (it is a peculiar talent of mine) but I swear I did exactly what the signs and the nice police persons all said… Got as far as… Somewhere and the road ahead was also suddenly closed, with people turning back round and saying that THAT bridge was also now closed… So the only way left was to turn back round. I scoffed at that idea, realised I was somewhere I recognised a bit and headed off up Hardknott Pass! It was just turning dark, so this was maybe not the cleverest idea I have ever had, but it seemed like a genius move at the time. There is no phone signal, ridiculous hairpin bends going all the way up and down a mad crazy mountain road, with added sheep sleeping on the road for funsies. It was pretty fun, in a put your foot down and sing along louder to Aerosmith kind of way. The fact it was dark by then was good, as I couldn’t see the sheer drop beside me… That road takes a LOT longer than you think but I committed hard and eventually made it back to Duddon Bridge and something kind of resembling civilisation and I only nearly drove very slowly into one cow and she didn’t seem too bothered!

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Kath goes back to work, gets wacked on lemonade and Voldetoe gets the chop!! (…ish. Ok, not so much). ***HEALTH WARNING: Pic of toes – not too manky***

This week is week two of Vasculitis Awareness Month and it has been truly lovely to see so many people getting involved in sharing snippets of their daily ups and downs whilst living with this disease. Lovely in a weird way, as it obviously isn’t at all nice that so many people have hidden struggles, but the way some people find nuggets of optimism or fun is downright inspirational.  A lot of the quotes made by Kelly for us to all share are based on finding positives and celebrating the strengths we have, rather than sinking into a pit of gloom when we are knackered or in pain… Below are some examples! You can pinch any that you want…

 

 

On the theme of awareness, Little Broo and his lass have been hitting the streets doing a bit of fundraising for the Vasculitis UK charity, in advance of their upcoming efforts at the Edinburgh Marathon at the end of May. He wants me to make it clear that it was 90% her doing, as he was at work and joined her afterwards… An amazing £170.32 was raised bucket rattling in one day – starting at disgusting o’clock in the morning (6am) to get commuters on Cannon Street station in London! One wonderful gentleman gave her £20!

***PICTURE OF VOLDETOE A LITTLE BIT FURTHER ON – LOOKING QUITE GOOD!***

Fun things recently have included being told my INR levels – still being tested through the Finger Prick of Joy – are behaving enough for testing to move to fortnightly!! My only blood test this week was therefore for EVERYTHING for my consultant to check on. Things don’t look too bad at all – my CRP and LFT’s are a little bit worse than they were in March, but… I have dropped pred and have not had a dose of chemo last month, so I can understand that really. The one that looks a bit iffy to me is the high red blood cell distribution width vs low mean corpuscular haemoglobin – one being higher than ever for me and one being lower than ever. Not exactly massively excitingly so, but general trend would indicate I am possibly anaemic, despite taking ferrous sulphate on a pretty regular basis. To pacify anyone worried about my tendency to poke my nose into my blood test results and then visit the internet, I like learning how I work and, more importantly, I won’t be panicking or doing anything exciting medication wise without my consultant telling me to 😉 He did recently suggest I could stop the ferrous sulphate so this would maybe suggest otherwise!!

**Edit** Consultant is perfectly happy with everything – I was looking at a breakdown with excessive detail, but the overall picture is not concerning him at the moment.

Last week I got to see my favourite podiatrist (my only one as well!) for a catch up. Mainly to show her Kevin to be honest; she last saw me before Christmas whilst between admissions, when Death Toe was an absolute state, but still attached. She had a good check over everything and agreed my toes look the best they have done since I very first saw her, over two years ago now. Yay for drugs! Voldetoe is the only one still being a poo. See below… She lopped a scabby bit off that was catching on my socks and basically said I was ok to keep going as I am, and just to get in touch asap if anything starts to look suspect or changes quickly. For anyone who remembers the epic blue mottling, look at the difference! Only that one idiotic toe is still a vaguely blue shade all of the time and nowhere near as prone to being ice cold or painful. Good times!

 

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Voldetoe – look how much better he is!

 

This month was the start of me going back to work after many months off; so far it has not been too traumatic! I had many hundreds of emails, have had to change ten billion passwords and had to get IT to help me hack onto my pc at home, as it needs too many layers of passwords to connect to the network to be happy with anyone who had recently reset everything… It was quite exciting; made me wonder if professional hackers spend all day – night… Squeaking in glee at their own (IT’s…) cleverness.  So yep, phased return is going nicely. I haven’t collapsed dramatically or anything, and have remembered basic things like how to use a mouse.

The following isn’t technically anything to do with work, but a good sign that my brain is feeling more alert… There was a recent post in the support group discussing how to drop daily pred doses at a rate that people can manage, without suffering from walloping fatigue and joint/muscle pain as a physical backlash. It made me curious, so I had a little dig and tried to find out a bit more… It is a lot easier to reduce the dose at a faster rate if you haven’t been on them for too long at a high dose, but for some people that is sadly not the case. As well as a whole host of delightful side effects (moon face, insomnia and general weight gain and bloatiness (a real word from now) to name but a few!), long term steroid use suppresses your body’s natural steroid production. Cortisol is the human body’s natural equivalent to prednisolone, produced by your adrenal glands in response to illness or stress. For this reason, at around 7.5mg (depends for each person) you need to slow down the taper to allow your adrenals time to activate and get back to normal production. Personally, I noticed a sudden increase in energy (don’t be excited. I mean less sofa hours per day!) at around the 6mg mark, which I would like to think was possibly the point at which my adrenals got back into action, thus making me extra steroided up in an overlap situation (also a real phrase). Not exactly sure it works like that, but funnily enough, googling ‘extra steroided up’ doesn’t produce many peer-reviewed results 😉

ANYWAY: I made a spreadsheet 😀 I realised from this particular post that a lot of people who get to the 7.5mg (approx.) mark need to start tapering slowly (which I already knew), AND need a system to help remember where they are each day dose wise. One of the admin has previously told myself and others about a system she calls ‘dead slow and stop’ which has worked for a lot of people, particularly when dropping after a long time on higher doses, or if they are struggling to get below 7.5mg without repercussions. I volunteered to have a crack at making something to help the author of the post and my brain WORKED!! Also it meant playing with formula a tiny bit on excel, which alternates between being my most hated thing in the world and the source of hours of joy and faffing. Ta daaa! I love having outbreaks of dweebiness 😉

Dead Slow and Stop method from 7.5mg

 

 

The above and below were taken on the east side of Coniston – first proper BBQ of the year and a wander on a very nice sunny evening. Felt so good to be able to walk and carry things, and to not be in pain the entire time, or wishing I hadn’t said yes!

 

 

We also found a friend, who I named Eric.

 

 

Despite how awesome it has been to be able to get out and about more, I am definitely overdoing it with the walking/general ‘doing a thing’ some days. I am finding it very hard to settle on a consistent level that doesn’t leave me on the sofa whimpering the next day. My body really wants to move now – I am getting urges to dance and wander to the park. Some days I have two GP appointments and the walk down (maybe 100m?) used to have me in tears or asleep in the waiting room, but I am now managing there and back pretty easily, unless I am stiff from the day before. Today for example, my back is very sore and my ankles are stiff and sore, because I overdid it yesterday. I took it easy today and hopefully should feel up to careful walking again tomorrow, but it is hard to up your levels of activity whilst restraining yourself so you don’t end up a whimpering mess on the sofa :/  Some days it feels like my hip is trying to pop out >.< Knees are so much easier to crack with a gentle stretch… The only thing that seems to help move my hip back to where it should be, is some kinda of Pilates warm up back roll I learned a long time ago off Mum.

The exercises the physio has given me are largely based around strengthening my upper leg muscles again, so as to stop my knee and hip joints taking all of the impact when walking. It was obvious when she explained, but you cannot actually strengthen your KNEES! It is definitely working; so much so that last week she said I don’t need a follow up, and am just to get re-referred by GP or contact her if I am struggling! She is pretty chuffed (as am I!) with how quickly I am getting back to walking around normally, but was warning me against getting overly excited. Problem is, what for most people isn’t classed as exciting exercise, or particularly strenuous, is pretty tough on your body when you barely moved for over six months 😉 Although not to the level some people have to, I did literally have to learn how to walk normally again, as over a year of limping and walking with my foot squinted up to avoid toe-floor contact is hard to undo overnight. It also had a knock on effect up my right side, where I was using a stick for so long, which is why as soon as I was stable enough not to fall over I stopped using it!

Final mention must go to the pub. Or The Return of Kath in the Pub… I have ventured into such establishments a handful of times now since my release/Death Toe chop. We have an awful lot of them in my town, so it would actually have been quite hard to avoid them. It has also meant I can indulge in some live music, one of my all time fave things to have happen in my vicinity. Good sides to all of this? People time is ace. Music is generally ace – I am forewarned and can thus pick what I encounter. Catching up with bar staff who I haven’t seen for MONTHS is heartwarming and has even been a bit tearful in some instances. I feel a tad concerned they missed me for the wrong reasons! I am not drinking any alcohol for the foreseeable future due to the warfarin and general state of my system; partly I want to be able to confidently blame any dodgy liver function tests on the disease, rather than any intake of booze! I never drank frequently to excessive levels, but did used to like a few rums or gins… Equally though, I can happily be in a pub or around other drunk people without having anything, which leads neatly to: Complaints! On the most recent of my ventures into local nightlife, all I drank was a cuppa and a bit of lemonade – at most a pint’s worth over several hours – and I was struck with the WORST insomnia. 5am. Not cool. Lemonade is thus the enemy from now on. Coke was already on the banned list, due to me suspecting it has made me acutely awake on previous occasions. Tonic and lime or soda and lime from now on… Or soda and blackcurrant…

Now Sir Terry Pratchett and I are going to bed 😉

May is Vasculitis awareness month!! In other news: Kath FINALLY gets ‘The Finger Prick of Happiness’ [in my defence, drugs and long overdue finger pricking] and makes her first adult house decision like a real, life-capable hoomin bean.

So the below is basically me today – fingers and remaining toes crossed not tomorrow as well 😉

I went for a walk on Saturday, borrowing mad, wonderful spaniel hound (see last post for a pic!). She was an absolute delight (e.g. no pulling on the lead, or trying to submerge herself in dead-fish-sludge), and I managed a good half hour wandering in one of my fave local bits of garlic/bluebell infested woods. I remained alive afterwards (just a teensy bit wobbly) and was very smug that I had had a proper stretch, with no toe pain or collapse afterwards. On Sunday I did a bit of the outside world and went to our local art fair – Print Fest. It was wonderful to see so much variety and hear people using fancy creative arty talk (some of it made me snigger a little…), but my joints were catching up by that point. I managed about half an hour, but too many people meant too much standing still, which is weirdly worse on my hips and knees than slow walking. The rest of the day I became steadily more floopy, and my brain said “No!” progressively louder.

Today has been a bit useless. I thought about sunshine and shuddered. The curtains have stayed closed all day. Pj’s have stayed on all day. I have achieved things like doing pill boxes for the next fortnight, but only as a means of appeasing the bit of me that was sad and angry that I wasn’t feeling capable enough to leave the house. I have definitely found there is a bit of a delay with doing ‘a thing’ [a short walk in this case!] and the ‘payback’ or ‘floop’ afterwards. It makes planning things scary, with the extra frustrating bit being that I can’t really predict the level of payback to follow. I have wanted to finish off this blog post all day, but my eyesight has been really awful and it has taken me until late evening to feel like I can handle focussing on the laptop screen. Most of the day has been spent listening to audio books (The Amber Spyglass at the moment!), and trying to make sure I am not forgetting anything for the upcoming few weeks. I struggled with the eyesight problem a lot when I was in hospital – on a LOT of drugs – and was blaming the steroids and morphine. Now that they have been tapered down so much, I am starting to realise it just seems to be part of how I currently experience chronic illness fatigue. It feels almost like making my eyes work normally (e.g. focus clearly) is one of the first bits of energy use that gets sacrificed, to be put towards other more important functions – like being awake 😉 In the Vasculitis UK Support Group on Facebook, we have been discussing fatigue quite a bit, following a recent British Society of Rheumatology Conference that had a section dedicated to discussing and sharing research (or lack of!) about it. It really has a huge impact on most of us, although to varying degrees day to day, and person to person. Tellingly, most people say it has more of an impact on their ability to live a ‘normal’ life than the pain. You can get used to dealing with quite a lot of pain, but doing that itself is also very tiring. I still find The Spoon Theory one of my fave ways to understand and explain it.

The following is a little bit of an update on some of the thoughts going through my head recently. It has made this post a bit more waffly than intended, but I can also blame brain fog so nyeh. Big Little Broo recently said he was worried about me being negative about the future, or in how I talk to people about how I am doing (very lovingly), and it is something I have had to think about quite a bit in order to decide how negative I actually was being. I have had many, many lovely conversations since about all of this and I think it was very helpful for me to step outside of it all and look at it objectively for a bit. Essentially? Being suddenly ill out of nowhere sucks. It really, really sucks. I am a disgustingly sociable, chirpy, bubbly person. I get upset if someone is mean to me, cry at sad adverts on tv and get insanely mad if someone is horrible to someone I love. None of that makes any difference or helps at all. There is no textbook on how to deal with a chronic illness and you don’t know how to process what is happening to you, sometimes for many years. In my case? It was over a year before I got any kind of name for what was happening to me and for many people it is even longer. It is hard to remain optimistic and plan things when everything – and I mean EVERYTHING – you relied on, or planned for in your future is under serious threat or stolen from you. It is that whole idea of saying “I’m fine thanks!” – and lying through your teeth as you can’t be arsed seeming negative ALL THE TIME, or telling the truth and risking people avoiding you, or stopping inviting you to things, expecting you to be there, etc.  I am very lucky with my friends, but it doesn’t stop it being something that most ‘spoonies’ fret about constantly. Anyone thinking I am being negative about the future (tomorrow, next week, next year…) needs to remember that it is (mostly!) more a case of being realistic or sensible. It is a learned response that has not come easily. I have essentially had to pick up through horrible trial and error that doing ‘a thing’ leads to becoming part of the sofa, or crying in a muddy tent, in a disgusting amount of pain and shame, or being admitted to hospital for several months and losing digits. The actual loss of Death Toe was a happy point for me, which many people probably find a little deranged, but that in itself is something I need to make clear. I am still able to find things to be cheerful about. Even if that is weird things like an amputation. Writing this blog helped hugely during some of the worst bits of hospital. It was a very strange haze of pain and opioids, and if I hadn’t still been clinging to all the little amusing moments, I would have given up pretty quickly. I have been looking back through this blog very slowly in the last few weeks, a post or two at a time. This has resulted in a lot of crying, but has also given me quite a good idea of how determined I was to find things to be cheerful about. Even if that was a funny comment from a ward mate, or a slightly less disgusting meal 😉

So… The Finger Prick of Happiness? I have FINALLY had my first INR test from a drop of blood out of my finger tip, rather than a vial from one of my long-suffering veins. This made me stupidly happy. For over two years now I have had regular blood tests. From October this became pretty much a daily occurrence, with only a few weeks off until I was released (minus Death Toe!) in February. Back in February I stopped the daily injections of anti-coagulants and started warfarin tablets, which I will likely be on for life. Since then, I have had at least weekly blood tests taken to determine my INR level and dose me for the upcoming week. My veins REALLY don’t like blood tests anymore; they refuse to give any blood at all, the needle ‘bounces’ off the scarred (fibrosed!) outside of my veins, and they basically need quite a lot of time to heal after over half a year of constant abuse from blood tests and cannulas. I find myself frequently apologising to practice nurses, telling them “it’s not you, it’s me!” so they didn’t doubt their skills. This is why, having finally stabilised within my target INR range, being allowed to have blood tests through an instant finger prick dosing machine is joyous. It is hard to allocate the credit, as I have been on so many different drugs now, but given the whole point of it is to thin my blood enough to effectively circulate in my toes and fingers, I think the warfarin is working. I say this tentatively, but I am noticing slow but definite healing in Fester (the big one that likes being infected alllllll the time) and Voldetoe (painful, annoying and never quite kicked off properly). My toes are still prone to being blue and mottled, but compared to what they were like last year, the difference is very clear. The very fact I have managed to stay out of hospital (except for planned chemotherapy and rituximab admissions) since early February is testament to that. This has included fighting off an infection in Fester whilst VERY immunosuppressed, and!! Fighting off my first cold/sinus infection WITHOUT being hospitalised again *smugness* 😀  I cannot even tell you how scary a fairly mild (gross) head cold was. I was absolutely knackered and my joints flared up massively, but I didn’t hit the line I had prepared to be the ‘give up and go to hospital’ point.

Drugs! I am still verrrrrry slowly dropping the level of prednisolone and painkillers I am on. The slow drop is partly so I don’t kick-off a physiological rebellion, but also so I can pin-point clearly if a reduction is too much, too soon. I had a doubting moment the other day, looking at all of the pills I was about to take for my morning meds, and wondering if they were all necessary now that I was feeling relatively more human. Then I followed that with the amused realisation that it is the drugs that are causing that improvement. I also have to remember that they have all been reviewed by both my GP and consultant several times in the last few months alone… It is very easy to tap into that general prejudice society has towards prescription painkillers and daily pill-popping. Even as someone who is both very scientifically minded AND going to be dependent on some level of drugs for a very long time – if not forever – I still find myself questioning if they are really necessary. This is pretty much wholly due to the fact that many people (generic use of people, also meaning myself in this instance!) are uncomfortable around someone dependent upon taking drugs constantly. I reckon (and yes, I am maybe straying into hypothetical rambling here!) it is because it challenges my perception of myself as a viable human being, who would have been eliminated in a pre-drug world, through painful, septic natural selection. THE NHS IS BLOODY ESSENTIAL PEOPLE! SAVE THE NHS, SAVE KATH! (Haha, Heroes reference 😀 )

Other nice things? I have a new baby cousin!! He is absolutely gorgeous of course. That goes without saying… His older brother is a delight and a fairly frequent visitor to my current home, so much so that he has his own shelf of toys, just under the fish tank he loves so much as well. But yep, they live a little while away, so driving over there is still a bit of a mission and it took a bit to be able to meet him. The excellent bit is, I think I get to see him again this week 😀 He smells perfect and did a wonderfully loud fart.

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My other new tiny animal friend is of as yet unconfirmed gender, still being called Floof (or similar). I would imagine that having ONE kitten is a little unusual, but Ginger (I called HER Spoon when she was a kitten) only had one. It seems that she has made up for it with extra enthusiasm for that one, so Floof is massive! Fair enough Ginger is a fairly delicate cat herself, but that kitten is just over two weeks old and I shudder to think how she managed to give birth!! He/She has more than doubled in weight/size already, so being an only child is clearly paying off!

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Recent house progress (as well as Big Little Broo painting most of the fresh plaster) has included an ALMOST finished bathroom!! I have made the first decision of its kind in picking the bathroom flooring… The mental angst and trauma involved was ridiculous. I exhausted myself driving to the nearest bigger shops to compare prices and options, only to find that the smaller local firm was very reasonably priced, as well as being able to give me samples to borrow and fit it quickly. I present… My nearly finished bathroom! Note, the exceptionally large shower and sensible (yet slightly shimmery) flooring 😀 I would only have been able to squeeze in a tiny bath, so went for an indulgent shower instead. With baths being at least currently inadvisable due to constant threat of toe ulcers (only recently, Death Toe made them impossible for over a year!) and not very easy to get in or out of with sore joints, the warm soak joy is sadly outweighed by the negatives.

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The only bit left to do really is fit the taps, cupboard handles, shower door and towel rail (just out of sight to the left), and fill the space opposite the toilet with my giant plant collection! Every bathroom needs a jungle 😀 Certain friends will be very chuffed to see the size of the shower, as CERTAIN FRIENDS have been known to previously put all of the plants in my current bath/shower for funsies… It is one thing doing it for a convenient water share, but quite another to obstruct normal usage!!

As a fun little aside, don’t search for ‘book throwing virginity’ in google. Instead, search for “book-throwing virginity”… I had come across the phrase in a very convoluted click through some book reviews, and absolutely adored it. The sentence being, “Tonight I lost my book-throwing virginity” in reference to the author of the quote’s displeasure with the book she was reviewing. I sniggered at the time, as I too have had the urge sometimes to throw a book very hard. For various reasons, but normally because the author has taken an original and promising premise and crapped all over it. I just didn’t realise quite how specific I would have to be to find it again, for the purpose of sharing it with you all accurately. Regarding books, I am still skipping through the Discworld series, although my pace has slowed somewhat; firstly due to being outside and being a human being a little more, and then due to the eyesight payback floop! I am on Witches Abroad and think this is about as far as I got the last time I decided to read them in order many years ago, as it is familiar, but only just. For anyone curious about the Discworld books, I cannot praise them enough. They are so clever and witty, but in such an accessible way. They are written in third person omniscient narration, so all of the action – past and present, and the thoughts of all characters are available to the reader. Terry Pratchett then manages to weave in an extra level of inside joking with the reader, through footnotes and sly references to our history and current culture, at the unknowing expense of the characters themselves. In trying to think how to word this, I actually just found an excellent article that uses Terry Pratchett himself as the main example! RIP 😦  Third Person Omniscient – Terry Pratchett That is probably the most nerdy paragraph I have written for a while 😉

Fun junk mail snapshot for you; currently decorating my fridge as I still cannot stop laughing at how bad I am in the eyes of some people… I honestly thought it was a joke, then realised it wasn’t and felt AWFUL – then thought actually, I still find it hilarious. Note the fabulous fridge magnets.

As mentioned in my haphazard shouty title, May is the internationally recognised Vasculitis Awareness Month. It also happens to be National Arthritis Awareness Month (both osteo and rheumatoid) and Ehler Danlos Awareness Month, to name but a few 😉 This is a chance for many people in the support group who aren’t quite as vocal or… sharing! – about the condition as I am, to share a few images or thoughts about how their lives are impacted by having a chronic illness. It can be pretty empowering to break your silence on a topic, but it is also a very vulnerable and terrifying thing to do. I think most of my facebook friends are pretty used to it from me, but please spare a thought that for someone you see sharing something who maybe doesn’t usually post about their condition – physical or mental – it can have taken a huge amount of courage for them to do so. The ultimate goal is to simply raise awareness, whether in making the name and problems associated with the disease more familiar with friends and family, or in giving other people an insight into what a lot of us struggle with daily, often in silence. I am not a silent struggler myself by any means, but that has largely evolved to be the case due to the love and support shown to me by my family, friends – and the support group having given me the courage and wonderful feedback to share my ongoing story through my blog. We also have AWESOME graphics to share and use wildly, as created by our very own Ginger Ninja Warrior, despite her not feeling 100% right now!

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…and lastly, but most certainly not least in the grand scale of importance,

I start work again tomorrow!!! (Ahem… Now today…)

After being off for seven rather eventful and traumatic months – and having had a few thwarted attempts wanting to get back into a normal working routine, I am due to start phasing back in my hours from tomorrow. The plan is to go back to a lower maximum of contracted hours per week. I had already dropped them at the beginning of 2016, when I started feeling increasingly unwell and began working from home. Now I will be doing just over half of what I had originally worked, split over a five day week, with the option to work flexibly from home still available. This is dependent upon meeting productivity and quality criteria, but the reduced hours and being able to phase them back up over a number of weeks should make this a little less of a shock. It probably seems strange to many people, that working with such favourable options is scary and potentially a bit overwhelming, but I am terrified that I will have forgotten every bit of knowledge I have accumulated over several years working for the company. Hopefully tomorrow will be reassuringly familiar and the computer will behave itself. It will certainly be very lovely to see some of my colleagues again – I strongly suspect most of the day will be spent on the phone to IT apologising for how many passwords will have to be reset. That, and going through *shudder* BILLIONS of emails. I cannot even imagine how many there will be. Hopefully the vast majority are already completely redundant… *shudder again* – Urghhhhh procedure updates 😦 What if EVERYTHING HAS CHANGED??? I have always found NOT knowing the answer to anything very scary;  my wanting to research the background of the medical side of things being a good example. I am basically walking back in tomorrow to being at the bottom of the knowledge chain again. It feels like the first day at school!! Which means…

GO BACK TO BED KATH!

Yes me 😦

(I woke up again to make this longer and post it. Oops)

In which Kath is officially celebrating a year of vasculitis!! Sorta/kinda… OK, maybe not celebrating :/ Acknowledging? Bemoaning? Grumbling about?!

To start off with a brief clarification, it has been… 28 months (ish) of dying toes, joint pain and feeling shit, but a year to the day that I got a positive test for cryo 😉 A year ago today that I got given the official “looks like vasculitis” nod. The cryo label is still a rather non-committal ‘probably’ but as frequently grouched about in the past, my blood tests for cryoglobulins at any significant level are not consistently positive. That means that despite cryo being a pretty good explanation for all my symptoms, progression etc., I am currently having to be content with a label of livedoid vasculitis/vasculopathy. This is much more of a descriptive diagnosis than a specific ‘thing’ (as it relates to me anyway), but without positive tests from a biopsy or some concurrent positive blood tests, I won’t know exactly what kind of vasculitis I have. I very well may have an overlap with some other kind(s) of connective tissue disorder; APS, lupus, fibromyalgia… NO ONE WILL EVER KNOW MWOHAHAHAHA!!

Regardless. It doesn’t overly matter. I am a year on from a bit of a breakthrough moment. Someone earlier asked me if it really was something to celebrate… It feels like it. Without that positive test, even if the label didn’t stick (tee hee) (that is funny because sticky blood… maybe a bit too subtle a joke??!), it eventually led me to getting in touch with both my current consultant and the specialists at Cambridge, and to finding the most lovely bunch of nutters and warriors (many qualify under both headings) at the Vasculitis UK charity.

(Most recent doc discharging me after the rituximab called me a “very pleasant young lady” by the way. I am feeling decidedly smug about that. This is the… Fifth time I have been called this by a medical professional!! Either I am really bloody wonderful, or they need to sharpen up their variety of adjectives. Or… It was love at first examination!! Ooooo yeah 😄).

Behold! The actual post itself from a year ago (facebook post – the blog was only an increasingly repeating twinkle in my sticky blood…):

“Just had one of my first positive blood tests back (other than the occasional “oops your kidneys are a bit sick…”) and I think they have decided stupid toe death disease is officially cryoglobulinaemic vasculitis, which likes to be best buddies with things like rheumatoid arthritis and lupus (which I am under investigation for already given stupid sore joint disease).

Upshot is, it is defo autoimmune (*gasp shock horror etc*) and it is going to need long boring courses of immunosuppressants to treat it so my toes stop trying to die :/ Other possible victims as well as toes and fingers, will apparently be my kidneys and according to the internet, the best everyday treatment is to keep me above average body temperature so the bad little antibodies stay dissolved in my blood plasma and stop clotting up my digits 😀 [Mum] – medicine says I can wack up the heating :P”

By this time, I had already determined that the cold hurt; my weird purply mottling (livedo reticularis) is more pronounced when I am cold, and I get increasingly sore and unable to move if I get chilly. Other times, I feel cold when it is downright unreasonable to do so. The weekend at home in Scotland being an example; I was making the woodburner do remarkable things and everyone else was looking at me like I had lost the plot and opening doors 😀 It was quite nice to finally get some kind of diagnosis – and subsequently very upsetting to have it removed.  Until then, it was becoming apparent it was a chronic illness of some sort, and I was curious, had paid attention in biology and capable of reading and therefore it was blatantly obvious it was an autoimmune disorder of some kind. I had known it as ‘stupid toe death disease’ (or similar) until that blood test. This was the first time I let my mind focus down to any specific family of diseases. It was the first time I heard the term vasculitis. It is really bloody uncommon (ANOTHER joke!! I am on fire today 😀 ) and it was something that had never been mentioned until that point by my rheumatologist, despite her having enough suspicions to go ahead and do a complicated and fiddly blood test. I started off my research, armed at long last with a NAME for what was happening to me. A name can be a very powerful thing for validating your condition to yourself first and foremost, and then to explain and validate it to others.

Anyway. A year down the line, the prediction of toes and fingers was borne out. I have lost a toe. I am kinda happy about the actual losing part to be honest, as the dead little shit that was attached to me was excruciatingly painful and putting that bandaged foot down onto the ground (although incredibly groggy post-anaesthetic!) was one of the best moments in the last year! I have had all manner of immunosuppressants; daily hydroxychloroquine (was already on that one to be fair…), prednisolone, just had third infusion of rituximab… Two rounds of plasma exchange – five days at a time. Two infusions of cyclophosphamide. Now on daily MMF… ‘chemo-lite’ 😀 I still have functioning kidneys with only the occasional hiccup re. them. My blood tests are slowly showing a little improvement from a rather hilarious spike in LFT’s as my toe died. I am on warfarin – probably for life – to stop my blood being sludgy, and my toes have managed a few months without any more ulcers forming. THAT one is an exciting accomplishment!

My daily drug list is now pretty exciting… I found the below again a little while back, by the talented Edward Monkton. It pretty much represents my day-to-day routine 😉 When you start talking to your tablets, you have been ill for too long or are bored. It is only if they talk back that you should be concerned. That’s what they said anyway…

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I am enjoying not being in hospital for ten minutes anyway. Touching an entire wooden table whilst typing this… I got to see my OTHER fave dog the other day, for the first time since September. We were both very excited 😀 Coincidentally, the below picture of us both is from a year ago today as well 😀

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Reading my way through the entire Discworld series is going well and quickly… I ordered them all, identified the gaps and stole a huge armful from the Parents’ house. Currently averaged one every 1.5 days 😀 Quite impressed with that!! Had an utterly shite day yesterday; at one point I will happily use the expression ‘could not move’ and for once literally mean it. I was whimpering on the sofa and for once it wasn’t even pain or fatigue, it was as if my brain and body just stopped communicating – I tried to sit up and it just didn’t happen. Several times. So I gave up and went back to sleep for a few hours. I feel a LOT better today. Think it is some combo of fighting off a cold, post-rituximab tiredness, dropping pred a little bit (have slightly tweaked the drop to make sure that doesn’t happen quite so dramatically again), and travelling back down/being awake for too long the day before.

I have noticed this before and this morning confirmed it; the rate my hair is falling out definitely increases on bad days like yesterday. The below picture is a little bit ick, but please be reassured that this is all clean head hair, salvaged before it went anywhere near the plug, so as to appease The Dad, Guardian of the Mysteries of the Inner Workings of the Shower Drain. So yep. When I say to people that I am losing more of my hair every day – admittedly it isn’t this dramatic every single day, but this is what I am losing most showers.

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The fact I still have a reasonable head’s worth of hair is solely testament to how stupendously thick my hair was to begin with, as this has been going on for two months now!! This is by the way (it should go without saying) not the result of any kind of deliberate pulling my hair out.  I am much more gentle than previously with the shampoo and conditioning, and since it got chopped shorter haven’t bothered with the hairbrush (I dabbled briefly), as it comes out just as easily running my fingers through it.

As a final blehhh for today, featured pic and below is the fabby poster designed by one of my Vasc UK buddies for the fundraising Little Broo is planning in May. If you have not already done so, I would greatly appreciate you donating even as little as a quid through the JustGiving link: Toetally Awesome The charity means a lot to me and many other people; Vasculitis covers a multitude of related sins and yet still manages to be pretty blinkin’ rare. This makes a diagnosis all the more difficult and stressful to deal with and learn about, and the charity is an absolute lifeline.

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Spanks!! xx

Kath gets up close and personal with the sofa; being home is exhausting and being ill is both very frustrating and incredibly complicated to organise. ***Lots of sweary ranting… and a beautiful pic of Death Toe remnants***

I haven’t really been getting the urge to do an update because I’ve been rather busy doing… Not a lot… What follows is a rather epic rant, so many of you may not really be too arsed about reading this, but frankly I am rather furious at the world, and my options are vent in writing or break things and I am not strong enough to break much more than a tissue at the moment 😀

I got home – e.g. back down from Scotland, from my parents’ house, a wee while back. End of Feb to be exact! Since then, I have had… Seven Doctors appointments in eight days. Two dressing checks, a GP appointment, full bloods for cyclophosphamide monitoring (which amounted to many many vials, including INR) and another three appointments solely for INR bloods. It is insanely confusing trying to remember all of these, even when they are all written down in my diary religiously. Which may sound ridiculous, but please remember I am utterly shattered and have for about six months been in hospital sticking my arm out at least once every four hours for a blood sucker or cannula or someone taking my bp. So when I cancelled an appointment a while ago WITH A FEW DAYS NOTICE – not even the one I thought I was in trouble for missing earlier on when all this was “kicking off” (my definition of kicking off has become decidedly more medical haha) – and added a note on the system saying ‘still in Scotland, INR test being done here’, I didn’t realise it was another strike against me at the local GP centre, as it was apparently a VERY IMPORTANT APPOINTMENT where you get set up on the stupid special INR system.

The other strikes against me having been because of the first time I was taken off the warfarin (in December) because I needed an operation to remove the hickmans line and my old genius Doctor (so much sarcasm. So so so much) had started me on warfarin a week beforehand: STRIKE ONE. Next, due to begin warfarin again in the New Year and got taken into hospital – urgent admission through A&E, cancelled online with a few days notice: STRIKE TWO. The next time it was discussed, I was flatly told that the local GP practice refused to monitor me and it had to be done at the hospital. Then the hospital said they wanted epic amounts of detail about my condition and why I was to be started on it and yadah yadah. A letter from my consultants at Addenbrookes was not deemed sufficient… So there was much bickering ongoing to sort this out and in the meantime, I was admitted urgently again and sent up to Carlisle… and my new genius Doctor (no sarcasm) was kind enough to finally get me cracking on the anti-coagulation juice in mid-Feb.

This went perfectly dandy, including me being tested to death and monitored in Scotland, until I got STRIKE THREE which was missing this VERY IMPORTANT APPOINTMENT. So I have had all these millions of blood tests in the past eight days and no one has actually been in charge of monitoring me. My GP is actually very wonderful and has essentially arm-twisted the practice nurses, who are all also individually wonderful, into setting me up on the system, probably helped by the fact they have been taking my bloods for the past few days and were seeing me attending appointments and diligently filling in my stupid twatting yellow book. I now have been told I have a new VERY IMPORTANT APPOINTMENT and that I absolutely cannot miss it as it is the last one available this month and if I miss it I have to go to CARLISLE!! to get set up on their INR twatting system and have all my blood tests sent up there… WHAAAAT??????? [To clarify, I am the one keeping track of the strikes… No one has actually bollocked me using the word ‘strike’ for a while, but I am aware fully of the incidents they are remembering and feel very aggrieved!!!]

Bahhhh. I have a trip back up north planned soon for Mother dearest’s birthday and it has basically turned the travelling for that into a bit of a complicated git, needing to be back down and rearranging all of the stuff I had arranged already with the GP practice in Scotland. My diary is disorganised chaos and everyone thinks I am horribly unorganised (I just googled the difference: DISorganised means thrown into disorder and UNorganised means not organised!!). I am in a shitty mood about it all and had an angry cry in the middle of a shop haha – Ooo! I actually saw humans – in real life – in the town!!!! For the first time since SEPTEMBER! – I drove, although admittedly literally two minutes – and went and did adult things like the Co-op for a bottle of milk and Costa for a chai latte (mmmmmm) with a friend I haven’t seen in months. It was lovely and the stupid INR crap has dimmed its brilliance 😦 Also starting to get fretty about Friday as I have the formal meeting reconvenement at work and I have to drive or pay £20 for taxis – that is basically the main reason for wanting to get a practice drive in today (and likely a slightly longer one tomorrow). It is a stupid mix of being happy for a chance to see my work colleagues and being upset about the whole being off work and formal meetings and having to essentially have yet another aspect of my life crapped on by being ill.

Being home has been nice for having my own bed back… and seeing my fish!! My shrimp is a handsome little dude. Most importantly, seeing my friends. I have had only a few weeks at the most since September actually being in my own house, as most of the recuperation time when I haven’t been in hospital (maybe five weeks in five months?!) has been spent up in Scotland! When not in the twatting GP surgery getting blood sucked out of me, I have been either sleeping or taking drugs. In the middle of all this I have finally managed to get some catch-up time in, including Giant Hound time 😀 I also (against the strong hintings of both Mother dearest and the accompanying friends…) went to the Vasculitis UK symposium in Manchester last weekend. This was amazing, partly for things like seeing that cars still existed – and tall buildings always excite me, as I am a country bumpkin 😉 But the singing in the car – mmmm! – and the hotel room with the giant tv and the kettle!!!

I managed the whole Saturday conference part, with some pretty informative and emotional presentations. I cried quite a lot and I wasn’t the only one. Meeting people I have been talking to online for so long was incredible and it was also a very useful chance to learn more about other people’s experiences and types of vasculitis. It covers so so much – essentially any blood vessel network in the body can be affected; lungs, heart, brain, skin, kidneys… Some very inspiring and motivational stories, particularly from the youngsters that shared their experiences. I didn’t manage the ball in the evening: I got all dressed up with Inside Friend and Fave, who had accompanied me and were equally as giddy about hotel room shenanigans 😉 and we ate a magnificent feast with a bit of serenading, and then I crashed and was asleep within about half an hour 😀 I did manage to get my pjs on and brush my teeth though 😉

*****UP CLOSE PICTURE BELOW OF WHAT AN AMPUTATED TOE GAP LOOKS LIKE – NOT AS GORY AS YOU WILL BE EXPECTING AND HE HAS A SMILEY FACE WHICH MAY AMUSE YOU, BUT STILL CONSIDER YOURSELF WARNED*****

As much as the pain I am dealing with day to day is so much less due to Death Toe being a goner, I am now having to deal with the rest of the condition being noticeable again, which has remained largely unchanged for over two years now. I first was aware of being unwell in December 2014 and that is about when my toes started to try and die. I have had daily joint pain, muscle aches, fatigue and brain fog since then, although to a certain extent it wasn’t so bad that it was impacting my day to day life and mobility until early 2015. So yes, Death Toe is gone. Speaking of, he has been replaced by Kevin Spacey (as named by Dad), who looks suspiciously like a vampire smiley face… Apologies for how close up Kevin is. I can’t make it any smaller and wordpress is not being cooperative. Kevin has at least healed well. Basically the only thing that has gone as planned in the last two years was that amputation!! The biopsy I had two days later… Not so well. Still a huge gaping wound in my hip and still requiring dressings and getting suspicious glares from the practice nurses, a month after being gouged at. Being ill is super fabulous in case anyone had missed the hinting earlier.

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Now Voldetoe has taken over as being a painful twat that is threatening to be infected. I remain off work six months on, on the advice of my Doctor, as I need yet more toxic crap thrown at me and get to start new drugs with new exciting potential side effects. Woopee. This is a very grumpy post. Kath is in a shitty mood. I am very chuffed to not be in hospital and to have my friends close to hand, but really… I am minus a toe and have precious little going for me day to day at present except taking drugs at regular intervals and attending appointment for people to suck my blood and get told off/sanctioned/isolated from society and have my stupid hair falling out at a stupid twatty rate, all for being medically weird.

Regarding hair falling out, one of my fabulous friends came and lopped about 50% of the remainder off for me a few days ago, as when it is long and straggly and falling out in handfuls it is even more depressing than short and falling out in handfuls. I thought I would be bawling my eyes out, but having a few of my buddies round making me giggle and making moustache faces on the floor with the choppings was sufficiently distracting and I managed the whole event without howling. Yes, I have a huge amount of hair left, but trust me when I say I am having handfuls coming out each day. Anyone who wants to get offended about me discussing this, because I have fabulously thick hair still and shouldn’t be complaining – or who thinks chemo is just for cancer – can come round and I will cram my moultings down their ignorant necks. Oooo agressive angry Kath !! I’ve dropped to 9mg of pred this week, I should be getting progressively more sweet-tempered – how confusing!!! 😀 Also about to get more toxic sludge in the next few weeks, although as not cyclophosphamide, not AS bad on the hair fally-outty front… But I am still only about six weeks from dose ONE and it says three to six weeks for hair loss to START on all the cancer websites 😦 Mine began after about ten days!!!

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I also get to go up to Carlisle again soon and get incarcerated for more rituximab because I got that nasty itchy rash all over me last time and may have an even more exciting reaction this time… At least Death Toe gave me a very specific focus for the hatred and the anger. Now I am hating Voldetoe; everyone is welcome to jump on board the hating-wagon.

Ahhh – the good news? I get pumped full of chemo drugs that are very likely to have made it impossible for me to ever get pregnant safely – and what happens? My shitting periods have started again, after taking a few months off and worrying the crap out of me. Thanks body. Very sensitive timing.

#rarediseaseday challenge – Day 28: RARE DISEASE DAY!

#rarediseaseday challenge – Day 28: RARE DISEASE DAY!

So everyone will have seen me posting about hospital this, infection that… Toe dying this, massive amount of drugs, something medical blah… And yep, it can get easy to skim past or ignore it all and think “nothing new, moving on, memes to read…”

Personally, I don’t know yet if I have a rare disease. Which may confuse you, but what is happening to me isn’t proving easy to diagnose. And believe me, my Doctors have taken many many many vials of blood and mri scans and xrays and chunks of flesh… My toes and fingers are essentially trying to die because my blood is too thick and my body has decided it doesn’t like my small blood vessels… or my blood. They don’t know yet. I am bloody lucky it hasn’t yet progressed to my other organs – kidneys being the likely next step.

What they can say is that it at least very closely mimics symptoms of small vessel vasculitis (they are now currently calling it ‘livedoid vasculitis’!). I had never heard of this condition before being advised that it looked like I had a really rare variant in approx. March 2016. By this point I had been really unwell for about 18 months already. So I got googling. Turns out its a group of super flippin’ rare auto-immune diseases where your body attacks your blood vessels. For funsies obv. I started learning about it as fast as possible, because knowledge felt like control and I really badly needed some illusion of that. My diagnosis has since become a little more vague due to my failure to abide by the rules regarding blood tests… But regardless of what variant or cross-over or mimic I actually have, Vasculitis UK have saved my mental and physical bacon.

To learn more about the volunteer run charity and the disease itself, please go to http://www.vasculitis.org.uk

Vasculitis UK have been a wonderful, crazy and understanding family from day one. Someone is online at any hour of the day or night due to all of our inability to sleep (pain or meds) and they have all been so incredibly tolerant of my rather madcap approach to life and chronic illness. They gave me a hefty kick to seek proper consultant advice – as regardless of best intentions, unless you are a specialist, vasculitis is simply too rare to be able to diagnose, make judgement calls safely or even get funding approved for the more exciting drugs.

I’ve now had quite a few exciting drugs. The most recent being cyclophosphamide, a chemotherapy drug that I spent many many months fighting to avoid having to take. I was too ill and medically weird though, so whilst having my second batch of five days of plasma exchange in three months, I was told it was chemo crunch time. Toes and fingers and kidneys vs. future babies and hair falling out and feeling pukey and crap… Since the start of October 2016 I have spent maybe four months in three different hospitals. The vast majority of people I have met through Vasculitis UK have had more than one round of chemo. Some are frequent flyers! It upsets and frustrates me to the point of tears that the general public and media perception of chemo is as a cancer treament: it is used SO much more widely than that.

So that is my message for this #rarediseaseday – CHEMO IS NOT JUST FOR CANCER.

If you are ridiculous enough to be offended by that, firstly please go google it and then either apologise to my hair that is falling out and make a donation to Vasculitis UK or unfriend me and walk away. I don’t need ignorant judgemental people in my life 😉 Donations can be made to the below page, where my awesome little brother and his buddies are running for Vasculitis UK and all of the amazing work they do and research they support. ‘K bye xx

justgiving – Connor & Co. running for Vasculitis UK

Snow-way!! O yeah, it snows properly in Scotland ;) In which Kath hits up the hospital for some more toxic sludge, builds a snowman and has managed – da da daaa!! – to get TWO SHOES ON!! – for the first time in at least five months :D

…although to be fair they were Dad’s shoes 😉 😄

So as per the plan, last Monday I was scheduled in for a full day back at the hospital for dressing checks and dose two of cyclophosphamide – along with the various other bags of stuff you need at the same time to stop you projectile vomiting and protect your bladder from the chemo.  I woke up horribly early (5.30am… So genuinely, horribly early!) and then as NOT PER THE PLAN, the car windscreen wipers were not working, despite two return visits from autoglass to fix them previously, after an accidental breakage during a routine windscreen replacement… So given I was still not feeling mega swish post-hospital anyway, Mum’s stress levels went through the roof as she was faced with a two hour journey on the motorway, in the rain, without a properly working car and a whiny delicate passenger, with a lot of people waiting to put drugs into the passenger… After a very nice polite conversation with customer services (using the calm voice that probably came across as very reasonable, but would have had myself and my two brothers peeing ourselves) we hopped (literally haha) into the rather erm… interesting… Landrover and went and got a hire car for the motorway bit and got down only a few hours late! I say interesting; now Dad is very fond of the Landrover, but it has a roll of duct tape in the front for a reason and it rains inside when you go round corners 😀 It also isn’t very easy to get into, but with making some epic huffing noises I have been managing to do some sort of scrambly “HUP!!!” type thing that a week or two previously would have been completely impossible. Autoglass are in trouble 😉

All the drug stuff went very well, although I am fed up of having knackered veins 😦 The inside of ones wrist is NOT a nice place to have a cannula in for hours. Bruising up like a peach still, several days later! Got a whole load of bloods taken and they were all spot on target, so I was allowed to proceed with all of the litres and litres of drugs – saline, something called mensa to protect my bladder and kidneys… Some anti-sickness thingy (ondansetron in liquidy form maybe?) and the cyclophosphamide itself. I was absolutely awash. Mum did little bits of nipping into the town centre, exploring hospital and nattering to keep me from dying of boredom. Dressing changes also went nicely – stitches out of both Toe Gap and The Wound – getting them out nipped like stink and The Wound is so epic it has needed steri-stripped and further dressing checks since and looks like it is probably going to leave a fairly fabulous crater type scar…

Hats off once again to the ward staff, they were very sympathetic and understanding about us being a teeny bit late – especially the wonderful lady who had already come in on what had been booked as a holiday to administer the drugs for me, as only a tiny handful of staff are allowed to handle the chemo until they have had a few supervised training sessions. The other car still isn’t fixed, but thankfully the only use the Landrover has been required for whilst Dad was away has been local trips to GP five minutes away to do my INR checks (every bloody two days) and dressing pokings. Warfarin is going well!! I am so far alllllmost managing to stabalise at about 5mg a day, so just tweaking a smidge to get me slightly higher into the 2-3 target range and then I might be able to get stabbed a little less often!!

Other than regular INR stabbings, I have managed to spend most of this week on the sofa getting rather worryingly addicted to Criminal Minds and NCIS – and have nearly finished the trilogy Fave lent me!! Also being at Scotland home, I have had a chance to eye up some books to take back down with me. Not that I am in any way short of books down at England home, but the heart wants what the heart wants 😉  Mog continues to thrive under the attentive love and care she receives when there are witnesses and other feeders…

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The precious angel is SO deprived; she was ecstatic with glee about being presented with a box of her very own and has spent the best part of the last 24 hours in said box, so that no one can take it off her. Poor baby. I had a wobbly few days post-chemo – Tuesday in particular I spent the whole day on the sofa trying not to puke. Only salt and vinegar pringles made me feel any better! Mum is a very wonderful Mum indeed, but her rather scary response to me whining about feeling sick  was to threaten me with immediate eviction if I puked on the carpet 😀 Since then I have been getting more ‘tiggerish’ as Mum puts it; just slowly getting back to feeling a bit more like myself. I have been trying to use my stick a lot less and pottering around the kitchen playing football with the cat has helped! I also had a very fun day washing a bath full of giant lego we picked up from a charity shop for my baby cousin… SO MUCH FUN 😀

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…and then as is probably obvious from the main pic and title, it snowed one day for hours and hours and because it is bloody freezing up here, it settled and I went OUTSIDE and made a snowman 😀 Yes, that is genuinely a snowman. It may be small and its eye and grass scarf may have fallen off in the time I went to grab my phone to take a picture, but it was too bloody cold to fix it and I have to be very careful with the cold so my fingers and more toes don’t fall off. Stop being mean and don’t bother with the comments about it looking like a turd, I’ve heard them all already. IT’S A SNOWMAN. The other exciting bit about that was that when I went outside, I grabbed Dad’s shoes and had two shoes on for the first time since… At least the start of October!!

Plan is currently to head back down on this coming Monday I think… “About bloody time!” Said Mum… Yeah, yeah, yeah… Pretty excited to see friends again 😀 In the meantime, the dressing on The Gap (which was a token bit of gauze for the last two weeks anyway) came off this morning! I now have two socks on and no foot dressings needed, so for the first time since JUNE – and I am not even slightly exaggerating!! – had a shower WITHOUT A WATERPROOF GIANT SOCK THINGY ON!!!! This went very well and although I was wondering how weird it would be, it was very much taken in my stride, as the more interesting/distracting bit of the shower was how much of my sodding hair is coming out 😦 The info on cyclophosphamide said it tends to cause hair loss in at least 30% of people and I had already had a bit of an impact off the rituximab from December… With ritux being a lot less toxic. So I was sort of already braced for it to be honest. It said it takes three to six weeks to start falling out if it is going to; I am now getting to about three weeks since dose one and the last couple of days it has been coming out at quite an alarming rate, every sodding time I touch my head. So showering was quite amusing! I genuinely do mean amusing, because for whatever mentally certifiable reason, my reaction was to giggle :/ I  guess it is better than me having stood in the shower bawling my eyes out, but I don’t really understand why I am finding it quite so funny!! I don’t exactly put a lot of effort into my hair – it never gets straightened or blow dried or dyed etc. and as mentioned before, I don’t even use a hair brush or dry it after a shower, but I am going to have to have a serious think about what to do now!! I don’t want to scalp it all off immediately, as it really could just thin out a lot and settle there… But it definitely needs a lop – question is, how short?? If I was a delicate little waif – and having naturally curly hair, I would obviously go for a crop of ruffled ringlets that would make me look like a pixie… But if I am brutally honest with myself, I would struggle to look very pixie like and it would likely instead make my face look rather horrendously round 😀 If anyone wants to volunteer to attack my hair, be my guest as it very well may all fall out a few days later anyway 😉

To round things off for this post, amuse yourselves with my Dad’s reaction to the news of my hair falling out this morning… “Ohh, that’s not good. You will be careful to look after the shower drains, won’t you?!” Ahhhh Dad priorities 😀  He has also suggested more recently, whilst watching a former school rugby legend (two years above me, so I sadly can’t claim friendship :D) captain Scotland to DESTROY Wales earlier hehe (stop crying Maria), that I should get a prosthetic toe to smuggle drugs in. It is an absolute wonder to myself and everyone else after reading this, that I have turned out SO WELL ADJUSTED. Or will at least explain to the sceptical scoffers, quite why I am a little bit weird…