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 😉

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 is confused about her mental state, has just had a whole load more drugs, and is trying hard to deal with using the Oxford comma :/

Having an unusually chipper few days – first time in a long while I have both thought about updating blog and then followed it up with settling down with laptop. A little bit of this I am attributing to the cheesiest radio station ever – Tom found it whilst doing the first layer of painting at my new house!! Mega 90’s/early 00’s tunes!! Smidge cheesetastic… It is the kind of stuff I was dancing my arse off to when at Uni/writing essays/would lose my mind if someone snuck into a dj set 😀 I should probably be ashamed, but I’m not.

A few weeks ago, I was prepping (as much as one can!) for the formal meeting decision; the outcome was a warning on my file and five days to appeal it. I was imminently due to go back up home for Mum’s birthday… I got the train home for her birthday, which was technically successful, but only really with Fave giving me a lift to the station and a very nice gap between trains at Lancaster, enabling a few metre stagger into waiting room and the next train arriving in the same place over 45 mins later. The looming appeal overshadowed it a lot and made me have weird anxiety dreams. My current repeating one has been creepy old men with long white beards looming at the bottom of my bed and making me wake up screaming (at least in my head :/ Not sure if I am actually screaming out loud…) and with my heart going like the clappers. This means I then stay awake for ages wondering if my body is waking me up through the medium of dreams because I am a) having a heart attack b) have a clot flying around somewhere c) kicked an ischaemic digit off the wall (THIS one has happened before!). Anyhoo, last time I was at home, I was putting together points for an appeal and fretting about it a lot whilst procrastinating massively and stewing about the deadline for handing it back in… Mum ended up making me stash my laptop away and CHILL OUT, as I was probably doing her nut in 😉

I have now come full cycle and am BACK in Scotland for a few days post-hospital (standard craic). Both times the cat was obviously delighted to see me. That should go without saying… First time first though. I had a few days of just myself and parents, then picked up Little Broo and his lady. It is those two who are running soon in the Edinburgh Marathon for Vasculitis UK. DRESSED AS UNICORNS!!! DONATE FOR KATH POINTS! Seeing them was awesome, even if they did have a little bit too much joy in their faces at the thought of a ten mile run in the rain, up a hill.

JustGiving link for Toetally Awesome!

Fester was being a bit of a git, so the day after getting home I ended up getting some email advice from my consultant and GP, and getting a course of antibiotics from local Scotland GP.

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Local GP has an AWESOME sunny waiting room!!

This ended up being x3/day for 13 days, because typically it didn’t clear up within a reasonable period. That would have been so surprising and unusual that I wouldn’t have believed it anyway, so 13 days was always going to be the case! The nice news is Fester is currently not oozing and I have so far got away with having an active local infection WITHOUT BEING HOSPITALISED!!! *high five, high five, high five* – I have had nervous moments galore since then and have now got a ten day stash of co-amoxiclav (same one) to start if he kicks off again. Voldetoe also being a dweeb. Constantly sore and ischaemic now for over 15 months but never really yet gone properly mental. Freaked out the other morning as he was being rather sore and noticed large black spot on the end in the shower. Black on my toes means necrosis, which means heart sinking and life flashing before my eyes and assuming the rest of my life in hospital;8 I essentially managed to talk myself into a complete state within the duration of one shower… My will was getting amendments made, I was working out how to self-amputate if my Doctors refused… Get out of the shower and line up all of the antiseptic wash, gauze for cleaning, medi-grade manuka honey… Turns out it was some black fluff that had resisted the shower 😀 It was both funny and a bit alarming to see how quickly I lost the plot over a bit of fluff :/ My toes are getting a ridiculous level of attention anyway. Checked at least once a week by practice nurse at local GP and twice a day I am checking them, cleaning and smothering in manuka. It is quite weird putting honey on your own toes all the time. It smells bloody good, but by the time I manage to get downstairs, I keep forgetting to have honey for breakfast. Ooo and Kevin remains fine and dandy – a lot of sensation in the end of the stumpy bit, actually more than the ends of my other toes given how much damage they have accumulated!! Maybe all round amputations is the way to go and just have ten stumpy bits!!

This radio station is awesome… Its the kind of music that I get excited at every single song and everyone else winces at and makes cut-throat gestures to whoever is in charge of the tunes. I miss music so much!! Its like that weird feeling where you feel alone even when you are with other people; I feel like I don’t have music in my life at the moment, even though it has always remained to hand. I think a massive part of that is not being able to dance, even just that casual dancing round the kitchen that was always a standard part of my day! I got out of the habit of having radio etc. on when in hospital for so long and when my old laptop died I lost a LOT of music that I had accumulated over many years. Only just now rebuilding my youtube faves lists and being awake long enough to bother turning anything on. Also finding I am ever so slowly getting over the sulking from missing SO MANY parties and events over the last seven or so months. Even just going out and getting some live music used to be a very regular thing for me and got steadily more and more impossible as the literally five minute walk to my fave pubs became an insurmountable obstacle!

Anyway… For Momma’s birthday, some Aunts/Uncles/baby cousin etc. all gathered for extended partying and food – and! Exceedingly Tall Broo came home 😀 😀 Little Broo went for some carrots or something and came back in with a really tall, really smelly and very tanned older younger brother! The little gits had been planning it for MONTHS to coordinate him coming back from the US as a surprise. He had even gone to the extent of ‘going off grid’ in case Mum used the whatsapp locator function to make sure we didn’t realise he wasn’t in Washington State but actually nearing New York for a plane home! He had a helluva faff sorting planes and trains back but arrived eventually and some of us maybe cried a teensy weensy bit… He has since come down to my house with Dad and spent a few days painting my NEW house – freshly plastered almost everywhere, so needs a LOT of layers of boring white base coat. He is doing well so far, earning his packed lunch each day but wanted talking to… :/

Mum’s actual birthday was pretty awesome! She had a pretty good idea she was getting a party by that point, as Dad had wanted to do it as a surprise, but I made him confess as anything else would have resulted in a divorce due to the unready state of the house for many houseguests and many many visitors on the Saturday night. A huge amount of food was made and brought and it was all AMAZING – I did that thing where you eat so much you go into a coma, which tied in nicely with the energy floop. I had to fall asleep flat on my face a few times over the few days; talking to people and being constantly excited and enthusiastic is draining! It was also quite emotional as well, with Big Little Broo being home, baby cousin being utterly edible and some very thoughtful and lovely words from my parents’ friends regarding how ill I have been. It was something I had been dreading a little, knowing everyone would know to a certain extent and that they would be happy and curious to see me semi-recovered and have questions… and knowing how knackering I find talking and sustained ‘human-ing’ right now. But it was actually just very nice – no one said anything that made me think they were being ignorant or thoughtless, several of them were talking about having read this blog and had lovely supportive things to say about particular things I had experienced, or shared stories of them being in hospital or having chemo etc. It made me very proud of my parents in a roundabout way for being the kind of people who attract such lovely friends 😛  🙂  SMUG KATH!!! Also went to see Beauty and the Beast whilst up in Scotland – didn’t fall asleep, cried a lot and got all dreamy at the size of his bookcase!

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Once on the floor, easier to stay on floor. Knees NOT happy right now!!

One of the nice things about being back out of hospital and on slightly fewer drugs is being able to read again without the words going all swimmy in front of me. Being awake for longer than half an hour helps, as I can get a good uninterrupted stretch to get properly sucked into a story. I missed it so much – it has always been a huge part of my life, being so deep in a book that I don’t hear people talking to me and getting violently angry if someone (usually a brother) even thinks about touching my book… Probably because they used to chew them, or deliberately lose my place to enrage me. Gits. My newest fave author (also Fave’s!) is Laini Taylor, creator of the magnificent Daughter of Smoke & Bone Trilogy. Reading Dreamdark at present and it is absolutely beautiful. Teeming with sentences with real depth and a … I don’t know how to describe other than a tasty texture… When I am reading, the way the words sound in my mind has a flavour and tangible quality to them that books of a less fantastic quality just don’t manage! I knew it was amazing from the very first page; I like to think I can tell from one page whether or not someone has that particular trick I love. E.g. First line on a random page – “Daylight twinkled into twilight as the last slanting rays of sunset withdrew from the treetops.” MMMMMFFF! The downside to reading again is that for some reason it tends to give my depressive side a nudge. Or maybe I read more because I feel a bit more gloomy? Maybe introspective is a better word; I don’t know. I had a bit of a spell of worrying about all the work meetings and getting pissed off that even though I am out of hospital, I still can’t do anything like as much as I want to physically – even when I would have thought I have already massively lowered my expectations 😦 Some days I am shattered by the time I have had breakfast, which is a bit ridiculous… I keep getting cheesed off as well at still feeling stiff and achy all the time. I think I am focusing on that more without dying toes being the dominating pain, but less morphine maybe also not helpful 😀 Sadly staying on stupid levels of morphine not an option, as not only does it make my brain mushy and isn’t safe to be on longer term, but it also will be masking all sorts at that level, and I need to know when things are kicking off to identify what this stupid twatty disease is up to.

I got a lift back down after the birthday weekend and got my appeal letter submitted, then got an invite for a meeting to discuss/present my case. Thankfully my brill Union rep was free to come with me to this one, as it is horribly stressy anyway, but knowing my tendency to run out of brain mid-sentence, the thought of a formal meeting solo has become pretty nasty. Meeting is over anyway and now just waiting for a result of some sort, once it has all been looked over. The weather has turned much more spring-like – and I have now had actual proper sunshine AND ice cream!! I had a crazy good day one day (maybe took too much pred or morphine??) and went for a wander at two and a half year old/very pregnant Aunt pace through the Priory woods. Was very very bad the next few days, but it was kinda worth it to get some fresh air, and to see genuine flowers and all the wild garlic down there. I have been a bit grumpy about the boom/bust cycle – with all the treatment and new things happening drug/pain wise, I have no idea how something will impact me at the moment a few days ahead. I am trying to be careful but also wanting to take advantage of the good days.

I did this one day and went to the big Tesco for the first time since September, but it was a bad idea. I took my disabled parking badge and used it, anticipating that even having a good day, I would be knackered after a shop. Not something I have done very often at all, for the simple reason that it arrived once I was already in hospital and since then I have barely ventured outside/been able to drive. Driving is a pretty new thing for me again! I parked just round the corner from the door, got out and was making my way in and a old man sitting in the passenger seat of a car in a different disabled space started shaking his head at me, glaring and waving his finger and pointing at my car and then me. My first reaction on catching sight of him had been to smile at making random eye contact, because I am that rather creepy person 😉 Then when I realised what he was on about, I firstly decided I was imagining it, then thought I would shrug it off and pantomime asked him “CAN I HELP YOU WITH SOMETHING?” He glared away and down when he realised I was staring back at him and had stopped… Not sure if I really looked threatening, but that was essentially how he reacted 😀 Anyway. I got into Tesco aaaaaand promptly burst into tears. Howled my way around the entire upstairs level. Whole point had been to get a printer to finally sort out all of my doc notes and emails, but ended up taking a lot longer… I called Fave and was crying so hard she couldn’t really work out what the problem was, but I was also kinda laughing at myself at the same time, as I knew I was being a little bit dramatic. It reminded me of the scene in Anchorman when Baxter has been punted off the bridge, and Ron is on the phone… In his “glass case of emotion” 😀

Classic scene! I was basically saying the words “mean man” and snotting a lot. This obviously made for a massive emotional wallop and by the time I got out of Tesco (lovely lady helped get the stupid printer to the car), I was a complete mess. I then cleverly didn’t go home and rest straight away, OH NO. I went and stress-bought (as opposed to stress-eating) more fish :/ I have very weird stress reactions. This is maybe the third time I have reacted to stress by buying fish or plants for my aquarium. Yes, I am a bit unhinged. But aye. It was horrible knowing that I was letting someone get to me so much about it; I think I have a level of underlying ‘guilt’ or a fear of being a fraud still. That is despite many many people reassuring me about this many times. The most hateful thing about it was the fact that I hardly ever use the bloody thing, even when other people are driving and before I dared drive myself again, particularly because I am always worried about whether or not I am in some way ‘taking the piss’ or ‘faking it’!!! The last thing I needed was some mouldy old bastard making me feel shit about it. It is hard enough as it is feeling crappy all the time, constantly trying to walk as normally as possible so you a) don’t look weird and b) don’t do even more damage to your joints/muscles. Oh yes, was not using a stick as PHYSIO HAD TOLD ME NOT TO IF I COULD AVOID IT. No stick, under the age of 80 and not in a wheelchair… So clearly not disabled yep? Crusty git. I have since had to deliberately make myself suck it up and do a cost-risk analysis based SOLELY on how I am feeling/distance involved etc. each time I have left the house/needed to park.

Other fun moments of anxiety/depression surfacing lately have included isolating myself in the house for a few days, as I was too scared to take the first one of my new daily MMF aka mycophenolate pills (I think of them as ‘chemo-lite’ when compared to the cyclophosphamide…). Reasoning for that being I didn’t know what the side-effects would be :/ Even though the most likely one was puking or stomach cramps, I essentially convinced myself that the world was going to end and stayed in sulking and avoiding making eye contact with the box. Ahhh the joys.

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Evil box…

I am a few weeks down now and nothing particularly exciting has happened. The only stomach cramping was nature being a git. Oh yes. TWICE IN ONE FRIGGIN MONTH. Nearly. I ate an entire bag of mini eggs for breakfast one day. That was a significant clue. Recently had my first physio app and the woman was really lovely; really good grasp on what it has all meant for me, regardless of the unknowns for me re specific diagnosis. I did a little walk up and down for her and she agreed that my foot muscles have gone a bit strange from trying to keep my toes up (sub-conciously) so I don’t touch them off the floor… Also that yes, using a stick is helpful when I am very bad on one side or having an unpredictable shhhlumpy day or super tired… But longer term, thinking about muscle wastage and damage from being lopsided etc., handier to not use it where possible, even if that means I am a bit slower. More important to try and walk ‘normally’ again, although she did confirm that most of what I was instinctively doing when I was learning to walk again post-amputation was exactly what she would have been advising. I already do a lot of foot flexing etc., but the thing I hadn’t appreciated was that when my knees are being horrific, you can’t strengthen a joint… You need to basically make the muscles in upper leg stronger to support the movement of the knee. That is maybe not technical jargon, but yep, even if I am having a naff day, I need to try and do even very basic movements each day, preferably several times a day. They aren’t exercises as such, more like making specific muscles work, which thankfully I have found I can do without putting much strain at all on my back or knees. The worst bit is actually getting up again when I have been lying down haha 😀 It is seriously hard; involves a kind of three point, three directional manoeuvre with swearing and hauling on end of the bed/sofa/chair etc. Really not my most elegant moments!!

Still got many, many doc appointments each week. Earlier this week I had some nice news re blood results (bone chem profile, full blood count, LFT’s, long term sugar check, cholesterol etc. – everything!!!); nothing new to be alarmed about and my LFTs are currently only approx. 1.5 – 2x normal adult range ‘max value’ instead of the 3 – 4x that they were in Dec when they peaked! As a comparison, since early last year when I started to get worse, those results started to climb from usually being at the low end of the normal range to the December high when I was exceedingly not well 😏 They have fallen very slowly but consistently downwards since then, getting checked every couple of weeks. As a reminder for those who maybe doesn’t already know, blood tests are definitely not a reliable marker for everyone – and I personally don’t tend to have very reliable results in terms of reacting when I am very flared or infected – or showing ANCA or raised CRP or any of the other NORMAL bloody indicators of the disease I have!!! – but I spent a long time being told that my blood tests showed NO signs of me being ill, only to find that that was absolute garbage. To have a visual marker of something improving month by month is so nice amidst all the crap. For this to be happening despite dropping pred slowly since I left hospital is very nice as shows that it is genuine improvement; maybe a tentative sign that the rituximab and the cyclophosphamide are doing something??

The other nice medically type news is that my hip biopsy site is now healing slowly (month and a half on!) with no sign of infection at present!! This is likely to be vastly sped up by the recent removal of four so-called DISSOLVABLE STITCHES… For whatever reason, my body just does NOT dissolve them. Doc thinks it is one of those interesting quirks that make me a medical weirdo/maybe something to do with my immune cell reactions to foreign objects being compromised… Same thing happened with the Hickman’s Line stitches – I ended up pulling them out myself, when the wound had basically healed around them. Left with a flippin HUGE scar 😦 The problem with biopsy site was neither myself nor practice nurse (until the other day at least) had realised there WERE any dissolvable stitches involved!! Given the 10m (approx.) of normal stitching removed over a month ago, having anything else involved smacks of overkill. So yep. Drugs slowly reducing a little/balanced by the new MMF… Doing the upcoming fortnight looks like this + paracetamol + warfarin 😛 Still takes over an hour, but economies of scale in having purchased second weeks worth of boxes!

Have just come full circle; back in Scotland having just had my third ritux infusion – featuring overnight stay – in Carlisle hospital, and heading back down tomorrow. It was very nice to see staff I know and like again, and I didn’t have any interesting allergic reactions. Yet. I have at least a month’s worth chlorophenamine on standby in case I get that fecking itchy rash all over my arms/face/back/chest again. Watch this space… 😛

#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

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!

 

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!!!

 

 

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 😀