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…
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…
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…
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!
So… Featured pic is BREAKFAST!
That is 60mg pred. 60!!! I was on 2.5mg for the whole month of August!!! Absolute fail… The reasoning for this comes in several parts, but needless to say I am quite buzzed. Very rarely had 60mg before, except for when getting a few infusions of methyl pred and although I managed some sleep last night, I also made the spontaneous decision to go to Grasmere Guzzler beer festival to see a few bands and was high as a kite for the whole evening! No, I did not drive. Many thanks to my driver 😉 Proper giddy kipper and basically had more energy and talkativeness than I have had in the whole last month combined haha! I think this is going to last a few days at this dose anyway, before tapering down again. Preparing myself mentally for hideous sleep deprivation though, I found it insanely bad in hospital on 30mg daily for the majority of the time, so goodness knows what 60mg is going to be like 😦
Reason number first… This little shit!
Fester (the big toe next to what was Death Toe and is now Kevin Spacey – ps how healthy and adorable does Kevin look!) has kicked off AGAIN for maybe the… sixth time? Was a little red and tender for a few days and then started waking me up on Friday night. Having not had infected toe pain for a while, it was horrible to experience it again, especially in the middle of the night when my imagination started going wild and life was meaningless and dark rather quickly… It was also very obvious when it crossed that line though, so for that I am grateful as I have been so cautious and worried about whether or not I would catch it quickly enough.
Excuse the toenails by the way – all of the drugs and infections for the last few years have done some serious damage to my nails, but they are growing in quickly and healthier, as you can see near the base! Part of me wonders if that has helped cause the infection, having healthy stronger nail pushing into the side of my toe? Have had many starting in the exact same area though, so it is definitely a dodgy spot anyway and probably weakened to some extent (although not exactly sure how that would hold up factually…).
Reason number next one? Hip hole!! Needs a cool name please, will take suggestions…
This is now (on the left) and when I first had the biospy taken, mid-Feb approx. I have been getting dressing changes and avoiding infection for MONTHS and until maybe a few weeks ago, it was healing over and thought to be on the last few dressings. Then it started to slide backwards and has slowly begun to open up again.
I saw my consultant a week ago Thursday and at the time he asked his dermatology colleague to take a look at my hip. He suggested I had possibly developed something called Pyoderma Gangrenosum… This is NOT gangrene, it is a rare skin condition where your skin breaks down to form ulcers and can be either a condition in its own right, or can develop in existing wounds. It is a little more common in people with other autoimmune diseases and would be a good explanation for why my skin has started to break down. My GP and practice nurse had a good look into it and agree it is best to assume it is this, so I had already started treating it with strong dermovate cream twice a day and it is being checked very frequently for a while to see if it helps. Added another bit to the stupid jigsaw! The high dose pred will also hopefully help with this, as if it is PG then high dose steroids are one of the most effective treatments.
Reason number last bit doesn’t come with a gross picture sadly, but just generally for the past few months I had started to slide back into mega fatigue and all over joint and muscle aches. By the time I saw my Consultant, I was at the point where I said I was now considering it as pain again. You get used to a certain level of background aching and stiffness, which I am glumly assuming will never fully go away. It is so hard to pinpoint when it even began, because it just crept up as slowly starting to feel ‘a bit naff’ all the time. This latest flare up began with much the same resurgence of more and more days feeling like ‘bad days’ when looked at compared to the relatively good few months I had in April and June. I was so giddy after getting Death Toe lopped off and the difference in pain was so overwhelmingly brilliant, that at first I did think I was just starting to be less tolerant of the joint and muscle aches, with nothing worse to mask it. But having now had a toe kick off again and my hip being worse, it really does look like it was the start of a proper flare. Maybe not showing up in my bloods (don’t know yet!) because that would just be a miracle given my record of blood tests, but we are generally advised to be aware of the early symptoms we showed, as they are usually the precursor to flares.
Had to give up Solfest this year – ticket refund was agreed at the last minute (on the day!) as I had the Consultant appointment, but honestly, the bit which upset me most was that compared to last year where I felt determined to do as much as I could despite the pain and feeling crappy, this year I just felt like I didn’t have the physical or mental energy to even want to try. I managed a lovely weekend regardless, with a visit from my baby bro and his lovely lass; they cooked for me and we watched films and it was glorious. That same weekend I was also compensated by going to the wedding of one of my best friends – cried the entire way through the whole ceremony… Apparently weddings make me a mushy puddle of goo! I didn’t manage a lot of the reception, but saw the speeches and cried a bit more, had a lovely time meeting some fabulous people – and the food was ace 😉 Going to Grasmere last night and being so hyper on the steroids reminded me how I used to feel at social events, when I would have a little bit of alcohol and be super happy to see all my friends and have the energy to not be focusing on moving around carefully, or being too tired to stand up. I had a bit of a dance!! I have been wondering more and more recently whether I actually fit more into the category of someone who is an introvert; someone who is drained by socialising and interacting with groups, even if they enjoy it. I had always assumed I was an extrovert from the little I have learned about it, although I can’t claim to fully understand it all, and had been a bit confused about how much I didn’t want to see people or leave the house recently. I think last night was a bit of a clue that it really is the condition that has made me struggle so much lately with social events – when I have ‘fake energy’ from a massive steroid buzz, I am absolutely over the moon to be running around and talking to everyone and quite happy blathering to strangers in a queue… Apologies to everyone I scared last night haha – I was absolutely wired off my face, it felt like the back of my eyeballs were plugged into giant sockets 😀
End on a few happy notes? Yes back on lots of drugs for a bit, but have been managing four hours a day of work for the last few months now and it is going nicely. Apart from my beautiful ergonomic keyboard breaking the other day… That was a bit sad. My managers and colleagues have all been really supportive and happy to see me back, which has meant a lot and made it so much easier. I was terrified I would have forgotten everything and be either failing to get the work done to a high standard or be unable to hit the targets, but I actually managed to exceed both my own and work’s expectations which was really lovely. Particularly when feeling a bit worse the last few weeks, four hours has been plenty – I am shattered after work most days and it leaves very little energy for anything else, but having a routine and knowing I am managing to work again has been worth it for now.
The other nice thing of the last few months has been my hair starting to grow back very fast – particularly underneath, the lower layers had thinned out dramatically and it has not only quite suddenly stopped falling out, but has started to grow back very quickly. Underneath I have a dense curly undercut coming through, which is amusing me no end, but the most obvious place to see it is around my hairline on my forehead 😀 Check out the baby fringe below!! I am trying to encourage it to fall in line with the existing curls, but have some rather cheeky misbehaving bits that want to stick straight up allllll the time. I am aware this is largely going to be due to having being on a lower dose of pred for quite a few months (not any moreeeeee!) and also it being a while now since I had the cyclophosphamide infusions (Feb) and the latest rituximab (April). Have been on a steady dose of mycophenolate since April, but apparently although people do commonly experience hair loss on this one, it does also usually settle after a few months. I really never used to lose any hair before being ill – hardly any ever came out in the shower and I never brushed it, so to suddenly lose what for me was a lot every day was scary. I know a lot of people go through worse and a lot more dramatically, but all I can say is although the drugs are very important, don’t downplay the mental impact of the ‘little things’ like hair loss, as they can have more of an emotional impact than the ones you would think would be worse, like getting a toe amputated! Still, when the drugs are necessary, the drugs are necessary.
I also started a different way of looking after my hair lately, about the start of July, at a point where it was still falling out very fast and showing no signs of stopping. I again cannot know how much of an impact this had, due to the drugs, but it was after about three weeks of this method that my hair stopped falling out. As in second picture, my hair is now the curliest and healthiest it has ever been. It has taken a good two months to get into a routine and find what works for me, but it has been worth it and I am eternally grateful and delighted that I found out about this 😉 You basically stop using any silicones, sulfates, mineral oils or drying alcohols at all on your hair and only use conditioner that fits those criteria. This means no shampoo! I have not used shampoo for two months and honestly, my hair is the cleanest and happiest it has ever been. No greasy scalp, hair is not weighed down and smells fresh and clean, even if I don’t fully wash it for a few days. If anyone wants to know more, search for ‘the curly girl method’ – works on all hair types, just particularly makes a very obvious difference if you have curly or wavy hair, as it accentuates any natural wave you already have. Now I am going to take some more drugs wooooooo!!!
Had a pretty quiet few months for posting – I think I post less now I have more energy and am feeling well enough to be outside or with friends. The combo of more physical exercise and working five days a week now means much less spare brain time for writing! Realised it is about a year since I started the methotrexate and started to go downhill fairly swiftly. Going to be quite an emotional few months looking back over last year! Just had another guff INR test – went from being very stable a few weeks ago on a regular 6mg a day, to dropping suddenly… Dose was tweaked up and the result improved a little and now it has dropped again. Dose tweaked up even more now and back to weekly checks for a bit 😦 Only thing that has recently changed meds wise is slight decrease in pred and stopping the pregabalin (nerve painkillers) and JUST started amlodipine for my mentally high blood pressure, as picked up by Consultant in an outpatient appointment a few weeks ago. Amlodipine is fun; started off on 10mg a day and I am finding my heart goes like the clappers sometimes… Pretty standard side effect apparently. No swollen ankles yet thankfully. Never want memory foam feet again! Quite hard to decide what is bearable, but trying to stick it out until bp check next week and if it has had a big impact will see if I can get away with 5mg a day instead!
Anyway, waffly update has been slowly being compiled for many weeks now as I knew I would want to splurge at some point. One of the absolute highlights of the last couple of months was Team Toetally Awesome running variously the half marathon and the relay for the Edinburgh Marathon Festival. £1680 was raised – see Toetally Awesome on JustGiving Given that the initial target was increased to £1000 this is pretty spectacular!! James, Izzy, Emily, my wee bro Connor and Callum – on behalf of myself and Vasculitis UK, thank you so much!! Lauren (a school friend, Uni flatmate and general co-shenanigator since the dawn of time) also smashed her fundraising target, raising over £260! I am so chuffed to have been able to be there, although getting to the finish line was not easy at all. Took several modes of transport and a pretty gruelling walk to and from the bus. Even those amongst us who were super healthy were struggling – the runners were all a bit stiff and/or limpy! Mega thanks also to Mum and Dad for everything that weekend. A lot of organisation and feeding happened, not to mention the financial input…!
It was cracking weather whilst up in Scotland and I had a bit of a walk and a paddle in the Loch! Still can’t properly swim as the hole in my hip has a dressing on it, but saw practice nurse this morning and… I would hope as soon as next week I will be sharing a really gross picture of the healed wound! It is majorly delicate and essentially a huge purple bruise type scar, but has finally sealed over completely and now just a case of letting it toughen up a little whilst protecting it a bit still!
The last two months saw me starting back at work (beginning of May) on a phased return… The phased hours are now finished, so up to a new weekly max. deliberately set up as a new contract to be able to stay in work, despite having variously crappy spells. Although still getting brain tired some days, the reduced hours mean I can manage this more flexibly at home and have sofa nap time midday when required. I have essentially sacrificed a big chunk of what was already a relatively low income, in order to try and have the physical strength and stamina – as well as the mental energy and enthusiasm, to get some of my life back to normal. Was a bit of a gamble, but so far I feel like it is paying off.
I have managed to be a little bit more myself sometimes with the socialising – much more music lately! The odd local pub gig and even a cheeky night out to Lancaster to watch my faves Bad Transmission playing an excellent set! I wasn’t too worried about it, but it is taking some getting used to having nights out sober when others are not… More for the being much more aware of everyone else’s moods and people being a bit more unpredictable than how I am feeling myself. Dancing when sober is surprisingly easy when you are overwhelmed with joy at the fact you CAN! I have still found I get a pretty walloping fatigue hit afterwards, but that is really not too surprising. I don’t know how much of it is the underlying disease and how much is lack of muscle strength, but I definitely get the wobbles after doing anything exciting and my ankles are the very devil for stiffening up! Sometimes before I even get in and collapse, which means I start walking like a penguin 😀 I could hardly get up the stairs without crying at the end of last summer, so to be able to have a bit of a dance feels incredible anyway, just need to take it easy still 😉 Below pebble painting was done whilst waiting for Bad T to do their warm up, pre-gig… Note also a lovely snail called James…
I also went down to Morecombe for the first time ever, to see local mentalists Deatbeats at a Steampunk festival – longest drive I had done for ages, wonderful company and some cracking costumes from both Deatbeats and Steampunk festival crowds.
Another nice wee bit of news; we have a lovely new shop in town, with beautiful vintage and colourful boho and festival style clothing. Colourful and wonderful says it all really!! She was kind enough to display some of the cards a support group buddy designed, in order to raise funds for the charity. So far over £300 has been raised by selling these cards and plans are afoot for further designs in the future 🙂
Have had my first brush with chickenpox exposure too – inspired me to finish off making a document for the support group files that I started a long time ago. I think it was even back in hospital…?! The question of what to do if (as someone immunosuppressed/with vasculitis) you are exposed to chickenpox or shingles comes up time and time again. The file I made is visible below and even if you are not in an at risk group, it may give you some idea of just what those of us who are have to think about… GUIDELINES FOR CHICKENPOX AND SHINGLES
I also made one for what to do in the case of a suspected infection. This covers all manner of sins, but even knowing this info, many of us – myself included! – are very guilty of trying to avoid hospital admissions. Personally, I used to feel like it was giving up in a way, even when I was getting increasingly ill and was not getting any proper treatment and had a toe giving me so much pain I was sleeping in 20 min stretches. I really used to try and hold out as long as possible, until eventually I went in and wasn’t allowed out for several months! The trick being, seek advice as soon as it becomes apparent and you can maybe avoid it getting worse 😛 GUIDELINES FOR SUSPECTED INFECTION
Recently ticked off a bit of a yearly milestone – Another Fine Fest, a locally organised event on its third year now, as a celebration of our home town’s very own Stan Laurel’s birthday. Cumbria Live write up! Lots of music all day on Saturday – was a little bit more careful than previous years and only went to see a few things to limit the walking around! Made a giant cardboard banana but didn’t actually take part in the banana parade/dancing… Highlight for sheer joy factor was the official World’s tiniest club hidden in an alleyway… Had a dose of Bad Transmission and Deatbeats… Downside was it being ridiculously hot; made me feel really shitty for a few days afterwards, with joints feel swollen and super tired. This was from even BEFORE the day of music and fun on Saturday (I napped halfway through!) and I was even more careful yesterday. I was actively wishing for rain, which would probably have DAMPENED the mood a little (heh heh)… After a few more melting hot days, it has finally had a few cooler days here with persistent drizzling today, very reminiscent of the bit of Scotland my folks live in 😉
I have plans to go see Rising Appalachia in Kendal for a tiny sneak gig later and factoring in some hefty resting to make sure I can deal with it – very excited 😀
Aside from that, trying to make decisions on things like kitchen tiles and not get quite so overwhelmed and fretty about tiny silly things like dogs barking and bigger pointless fretting about things like INR results and hair loss!!
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!
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 😉
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 😉
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.
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!
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.
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!
…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)
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…
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 😀
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.
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.