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.
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.
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!
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.
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… 😛