This post has taken a looooooong time to put together – I keep adding little bits and not finishing it and then doing a mega floop and falling asleep very dramatically. I think I underestimated massively how knackered I have been and how much more time you have to do ‘nothing’ (eg. sit and type a blog 😉 ) when you are in hospital!! Being back home has been so utterly fantastic but very tiring and full of so many extra things to do and think about! Even sorting through drugs for the day takes ages and ages – I sorted through the next six days worth last night and it honestly took nearly two hours, I am not even joking!!! I still feel like poo basically – my joints and muscles are about as sore as they have ever been, which I am guessing is a combo of having been sat on a hospital bed for two month and also having not had any immunosuppressant acting since the meth was stopped about… two months ago now. But! I have had the first dose of rituximab and the second dose is being sorted out potentially for the end of this week, so hopefully, one day, Death Toe will have fallen off and healed up and I will no longer be attacking myself all over the place and MAY wake up one day not feeling like someone has been kicking the living crap out of me 😀 THAT is the dream!!! I have asked for a referral for some physio at some stage (thank you brain, just remembered to add it to the ‘follow up with GP list’ 😉 )
The last few days have actually been particularly bad… I woke up Sunday; as an example – and as one does when one is on water tablets, needing a pee incredibly urgently, so there wasn’t a chance to do a gentle warm up stretch to movement. I knew straight away I was going to be very ouchy, so got myself downstairs towards the painkillers quite quickly. Inside Friend has still been staying to Kath-sit me and she helped with some wheetos and a cuppa and then once I had scarfed the painkillers and got myself on the sofa under the Magical Toe Healing Quilt, she went through the drug list with me and got the morning pile done. Saturday I forgot to take pred until about 3pm and I noticed it very very badly – I had the hour of pred clam a lot later and the insomnia thing was also delayed. It was also the second day of reduced pred dose by 2.5mg which may explain a little why I felt so shit the last few days… As although we have decided pred doesn’t do much to fix things, it physically must be doing SOMETHING to me! Anyway. Death Toe was being an utter nob Sunday as well as bad joint/muscle soreness. I changed the dressing on Saturday for the second time (woop!) and the actual dressing changing doesn’t really hurt as much now (compared to when it was infected and the nerve pain was the major issue… Although I forget a lot that I am on a LOT of painkillers including morphine, so actually it probably does hurt and I just can’t feel it too much!!!). The real pain usually kicks in about half an hour later, where I have carefully cleaned all the sticky gunk from the crack that has formed all the way around the demarcating bit between me and Death Toe and the fresh inadine then soaks in. So that is the kind of pain I had all of Saturday evening and Sunday, and it is a very ‘salt in wound’ kind of pain. I don’t know what happened in my sleep Saturday night, but presumably I was rubbing it on the bed in my sleep as it was much more sore than normal and more in a ‘been knocked around’ way than normal 😦 Stupid toe. So back to the story! Sunday morning, I had painkillers and was on the sofa desperately waiting for the oramorph to decide to do something and it did!!! – and I basically passed out again for about an hour and a half. Inside Friend said she was praying I would stay asleep a bit longer but could tell I was waking up, because I started making more and more moaning noises in my sleep. To which I asked if they were at least sexy moaning noises and she laughed and said, no, it was quite obviously pain moaning noises and ‘not in a good way’ and that I was also rubbing my foot more and more off the side of the sofa… So if I am doing that in my sleep when I am in pain, that maybe explains why I am waking up with it even worse! She also really doesn’t like feet, so I guess I can’t expect her to find that in any way sexy 😀 Still a bit miffed…
Brain fog is different off the meth; I still I have a desk completely covered in appointment letters and reminder and diary notes, because as much as my brain is a billion times clearer and my memory a lot better, I have waaaaaay too many very important doctor and drug things to remember. So the post-it notes and writing everything down and desktop stickys and phone memos are going to have to continue Had to take pics of all the doc appointments to send to work as well, so at least I know they have an ongoing paper trail whilst I am off and I have copies on laptop now if I lose them! 😀 But yep. Short term memory still bad for ‘things and plans’ but I can formulate sentences and actually put the plans together a lot better!
Herval looks amazing in a scarf by the way…
I got home about… A little over a week ago. I was initially obviously very excited about Herval and just breathing non-NHS air (probably it being all fresh and Lake-Districty helps!), but was also absolutely buggered. To the point where Inside Friend has been staying over pretty much every single night since busting me out and driving me back up, and she is basically doing everything for me apart from the bodily functions – and is currently washing my hair as I still have a tunnel line in that has to stay very very dry and clean! She deserves a freakin medal! Fave is also round a lot as well as a good bunch of my other best ladies, and they have been exceptionally good at agressively telling me off when I am getting over excited. Eg. every time I move or try and put the kettle on myself 😀 I am sleeping a huge amount more than I was in hospital but am finding – maybe because of being still longer at night?? – that I am waking up very very sore 😦 Not even with the focus being Death Toe! So all of the telling off is probably very necessary 😉 My parents came down and did a shift looking after me for a few days as well!! I had to go to an ENT check, which Mum was driving me to and I managed to get the wrong hospital *whistles innocently*… But we managed to turn this into a pretty sweet day out that involved a lunch – in an actual non-NHS food venue!!!! – and a pair of boots for xmas – that I was allowed to keep one of for straight away and it is the first shoe as opposed to sock or my Dad’s… lovely… sandals… I have got onto either foot in literally two months. The stupid methylpred water retention has now pretty much finished brutalising my left foot, so I can keep the left boot and the right one has been confiscated to wrap up for xmas as no shoe will be going anywhere near Death Toe until… Well ever I guess now, as I am assuming he will remain a dodgy sore shoe hater until it falls off! Death Toe foot is still a bit swollen, but I am guessing that is maybe the Nitro-Dur patches doing their job and pulling the blood down? THAT seems to be working anyway, as the big toe on that foot had an ulcer that had been bad back in – well a year ago now! – and although the ulcer healed up, the skin remained damaged. Whatever the Nitro-Dur is doing – or the influx of water damage???? – something has made the skin start to sort its act out. This is gross so sorry (notsorry) but it is basically making the area peel like some kind of icky toe snake and underneath is MUCH healthier looking!!! It is very satisfying to witness 😀
ANYway – look at my actual shoe/boot on my actual normal human sized again foot 😀 (Katie this is hopefully safe enough to have not put a warning? 😛 )
The ENT appoinment was basically to see how I was getting on with the hideous level of silent reflux – the Dr who has now seen me twice, has basically again shoved a camera up my nose and down my throat and confirmed that the double dose of omeprazole they wanged me on in Addenbrookes (up from 20mg to 40mg) and 4x daily gaviscon need to keep going as it is still not fabulous at all… I may well be on all of this business forever haha – it is still REALLY bad despite upping these and I can tell within one missed dose of gaviscon (now that I have actually noticed it initially!) as my voice goes much more hoarse very fast. Dr I saw today actually noticed as well which must mean it is pretty bad as she has never commented on it before and I had only missed a dose by… a few hours at that point. I am going to be on a lot of medication for quite a long time, but one of the other very nice bits of news I came home from hospital with is that the pred appears to have never really done a lot at all for me. I was on an oral dose from the start of the summer when Death Toe was obviously kicking off – this is standard autoimmne flare protocol – and it was also at the time bridging until the meth I started then had a chance to work. When I was then admitted, the dose got wacked back up and some (I had tapered down and was juuuuuust about to breach the 8mg point!). Having reviewed everything, I think the thought is that it didn’t ever help – certainly I was feeling more and more crap each day despite the methylpred, which is a beefed up version of the oral pred… So maybe my stupid body just doesn’t like it? I get to do a nice fast taper anyway – thats the good news!! Managed the first 2.5mg drop four days ago without any big changes. Yes I had a few crappy days recently, but I have been having crappy days and good days on and off over the past few weeks anyway and there was no consistent pattern. So hopefully (assuming I don’t flare up stupidly badly – in which case I would be buggered!!!) I will be back down at the 10mg hover point by the end of Jan! Stupid pred. Cannot wait…
Random arty asides to have a happy moment – so I got VERY excited about Christmas decorating when I knew I would be out for Christmas this year. I have firstly got a tree in the house, with a HUGE amount of help from Inside Friend, even though she didn’t seem to fully understand my joy for every step of the tree process… Including picking it with my own mysterious and strict criteria and smelling it… There has been a LOT of silly money spending on etsy (see above for my absolute favourite find of the year – in fact of life. Ever) – my tree decorating essentially consists of ‘coloured lights, no tinsel and all of the clashy awesome baubles’, with a couple of tacky ones for giggles and absolutely no coordinating allowed.
But then the above happened. Because some of us can’t judge how long a string of lights is required… This has already given the support group posse a lot of amusement – I would say at my expense, but being a bunch of feeble tree incompetent buggers the majority of them had similar stories 😀 The pictures alone have been spectacular and made me feel a lot better haha! So the main theme seems to be when you are disabled, decorating a tree takes several days OR a lot of help. Mine is currently three days and counting – the short lights went on and it nearly ended me and then again nearly ended me laughing at what it looked like… Then one of my reluctant elf friends removed them for me… So I now have a naked tree again and longer lights that magical tesco elf men delivered, that somehow need to get onto the tree I need some slightly more Christmassy friends but ones that aren’t also broken!! – and then I can get on with the very important job of spewing multicoloured fabulousness all over it!!!!
This and the featured pic also happened not long after I came home – as much as I love my friends, I didn’t cry when I saw them much – I was too excited and yabbery – but I had a good little weep when I saw my dog buddy 😀 😀 Partly she was so disgustingly soppy and came and crawled into my lap – or as much as she could manage… She is MASSIVE – and then she was also doing what all of my dog buddies do and very delicately sniffing and licking Death Toe sock – so it either is a ‘this bit of Kath hurts, lets make it better’ thing OR Death Toe smells like an interesting sausage and only good manners stopped her chomping it off! Maybe I need to find a badly behaved dog… I have one more to go and see as soon as someone comes and drives me over to her and I am expecting to be equally teary 😀
Speaking of friends and arty stuff though, Fave is shortly to be updating her website (she promised!!) and in the meantime I got to see lot of her stuff and purchased a whole bundle of things from her stash from the art fair I had missed 😀 BEAUTIFUL THINGS!! To clarify, I didn’t buy a radiator, but she recently decorated it for another local lassie and it worked pretty bloody well I think!
Another buddy has started a worm business – she has a LOT of happy Tiger worms, which we discovered we are both equally dweeby and excitable about – self-confessed so you can’t be mad Bex! 😉 – and I got some as a late birthday gift and they are awesome and the only sad thing about all of it is that it is quite hard to individually name worms that don’t want to be seen in the light and all look quite similar… If anyone decides they also want some, you can keep them in a celebrations tub like me and give them kitchen waste and talk to them every day, or you can pop them into your compost heap… But they do have babies – apparently quite regularly – and so my friend is selling them at the moment (maybe the sudden demand from my share will overwhelm her supply!!!) at the following link Happy worms to be your new kitchen pets hehehe! Dad – spoiler alert, don’t buy any, you are already getting some for xmas 😉
Lovely quote from another arty friend re me getting excited about all the crafty things – made me smile for hours – “Life has given you foot lemons and you’re gonna make mega arty lemonade!!!” 😀 [Love you missus!]
In other Kath arty news, I am still knitting but not started the second mitten yet! Got distracted by this beautiful squishy wool and have been making myself a phone cosy… I ordered an amazing new phone case that has narwhals on the back and although it is wonderful, it doesn’t really protect my phone much So squishy phone cosy has been made for lobbing phone into handbag etc! Also has given me a chance to perfect moss stitch – very very easy once you get started with it. Generally finding I can handle learning new knitting things as long as I take it slowly – and the biggest problem I have is with my short term memory being so brain foggy, so I forget what I just did – and still not brilliant at telling from looking at the stitches!! I knit too fast for writing it down to help either as it just slows me down, so anything other than a quick tally mark after a long row is very annoying!
Its like pink squishy spaghetti and I love it!! I finished the rest of the knitting part today when I was in getting blood tests prior to the second dose of rituxumab a bit later this week. THAT whole thing was a bit stressful. This morning work came round on a ‘welfare visit’ to basically check how I was doing and run through the current doc appointment situation and fit notes and give me a chance to sign the consent form for the occupational health assessment etc. Was actually quite nice to catch up with them 🙂 and then they were lovely enough to give me a lift to the hospital as it isn’t too far from the office. All I had actually achieved this morning was waking up, brushing teeth, eating some scrambled eggs, taking the drugs I had already put into a pot and then talking to work colleagues for an hour… and I was BUGGERED. That is the sad sorry reality of autoimmune things – basic life stuff and a conversation can absolutely knacker you. It really isn’t any wonder I was so angry all of the time in hospital when people wouldn’t leave me alone haha 😀 SO then I get into hospital and get a porter to take me to the Rheumy base and subsequently sit for HOURS waiting for bloods and urine results… Good thing I took in knitting!! Nitrates in my pee was the first lovely treat of the day, but clearly nothing too dramatic as it was followed up with full analysis and nothing was said…. I (maybe stupidly and quite unlike me!) didn’t really chase it up but they let me go without antibiotics – I think they were more distracted by my DERANGED LIVER FUNCTION that showed in my bloods 😀 best phrase EVER! – but again, didn’t get the actual levels :O Very unlike me… Maybe this is terminal???!!!! (Joking people, calm down!) So the upshot is I am getting rituximab dose two on Thursday I think… but also have to get urgent liver bloods done Thursday morning. In a weird way I am actually quite excited – I know that sounds warped but I have never had any raised levels before and it might actually help Addenbrookes pin down a diagnosis more clearly…?? I feel like shit at the moment anyway so the only surprise is that it is finally showing in my bloods. Is that all a bit weird? It probably is 😀
It has been a while obviously since I posted and I don’t intend to be quite as ranty hopefull going forwards – I think hospital and maybe the ‘roid rage brought out the worst in me 😀 Certainly I scared myself a bit with how angry I was! I have never been that angry at strangers before and probably a lot of it is not being able to get away from them or have any personal space… But yep I really didn’t like feeling that way!! Anyway, thought you all might like one more proper ‘Kath in hospital’ rant 😀 I was going through saved docs in an attempt to make sure I have all of the doctor appointments saved to send to work and found this. I saved it at the time as I was probably feeling too mean and I was reviewing it at about 3am from what I remember, but it had upset me too much at the time to delete it. Now looking back both feelings are suitably distant!
“I just reached a new low even for me… The eldery woman with seriously bad alzhiemers who is full of plague germs and snots all over everything was just getting told her birthday was next month and she had to behave so she was out for her birthday… So she started getting very upset and wound up about being in on her birthday and my thoughts were not ‘poor woman, she might be in on her birthday’ but the unfortunately mean combination of the following: a) she wouldn’t have had a bloody clue if you didn’t wind her up about it and b) mine [I meant my birthday] is in… bit over 10 days and I’m looking guarunteed to be in here [HA! I was in hospital but I was at least at Addenbrookes by then! Kath-win!!!] and b.1) I’ll KNOW IN ADVANCE b.2) I’ll REMEMBER [ouch – harsh Kath 😦 ] and b.3) I’d usually be doing much more fun stuff than sitting opposite the incubator of the black death with my toe rotting off… [HARSH!!] But then maybe you get extra morphine on your birthday tho yep?!” [didn’t… but did have a lovely birthday and not like anyone is short changing me on the painkillers, so not complaining NOW! 😉 ] Haha I actually really really liked that woman – she was the one that was so polite to everyone and she used to be a nurse herself, so her and all of ward staff got on fabulously!! I was more mad at her family than her, but calling her the incubator of…. Ahh yes the black death! Was in response the the excessive sniffing and coughing that was driving me utterly insane!!
Anyway. I basically need to go pick up a lot of drugs tomorrow AND then spend two hours with my head in the drug box again as SOMEONE forgot Christmas was coming and that I will be up in Scotland for… a while! SO I need a lot of drugs. [So many drugs. The level of drug taking has now reached disgusting levels. I also get to inject myself once a day 😀 ] Many more than I ordered yesterday when I proudly filled my new four compartment a day drug organiser [it is pretty awesome!] Stupid Kath!!! Oooooo I also started warfarin yesterday – had my first ever INR appointment and the nurse is SO lovely!!! Got a follow up on Friday but my level was exactly within expected for a first test – 1.0 in case anyone cares or knows what that means – and my target is 2.5 so I get a daily pill to take to raise it – and a higher level means my blood is clotting SLOWER (just to be confusing) which is what we want!! The very sad bit is no more cranberry juice ever again as it has high levels of vitamin K and is particularly dodgy for affecting INR results. Poo!! I did coincidentally have a glass of fizzy cranberry and raspberry the night before, which now feels like some kind of magical fatalistic farewell!! Also met the practice nurse who will be in charge of Death Toe – at least every now and then to check the little bugger – she has THE BEST DRESSING CUPBOARD EVER and the fact I am excited about that means I need to stay away from hospitals haha – but yep she was also very very lovely. One of the nicest things about both of them was that they properly respected what I will bluntly call my intelligence AND my wish to be involved in my own care. This was one of the things that was increasingly upsetting me during the first part of my hospital incarceration; the feeling that I was being ignored or dismissed as being a hypochondriac – and then as someone who was getting paranoid, when actually I wasn’t getting referred when I wanted – for WEEKS – and I wasn’t getting the drug I wanted… I don’t know if there is a seperate discharge somewhere I haven’t seen that said I have been a demanding patient anyway, but I have spent the majority of this year dressing the stupid toe intermittently between podiatry appointments and then looking after it a lot in hospital/since being discharged, so I have worked out fairly well what is comfy, what works etc…. Basically I think they are both my fave two new nurses 😉 Subtle flattery gets you everywhere haha – maybe they are doing it intentionally for Christmas sweeties??
Whilst I remember, we were having mega discussion online the other day about getting access to notes – it is NOT mentioned anywhere obvious on the patient access portal, but I checked with my GP and found stuff out!! – the girls were VERY helpful! In the past I registered for Patient Access but had only asked to see repeat prescriptons so that is all that was added and it doesn’t make it clear on the portal what else is available. I had only needed one form of id to do that and was given a log in code to add when I registered online. When I asked on the phone, I can take in two forms of id and then fill in some forms – needs extra forms because so much access to my details – and then they will add all of the notes (in at least their computerised form) to my patient access portal. [Have already done this and waiting for it all to be added now!] To get hold of a copy of my paper notes in full will cost 50 quid, but they also said I can go in and talk to them about anything I am not sure about and make an appoinment to look at the paper notes (under supervision) without having to pay. This may help me for example, as all of my notes from Scotland are in paper form and were just summarised onto the computer when I registered in 2011. I do want to get hospital notes in time, but waiting until I get paid 😉 and maybe one at a time as its not like they are going anywhere and I’m aware it might be quite emotionally upsetting/tiring!
As another little Kath-brain aside, if anyone remembers me going mental about the body shop shampoo – the rainforest shine one – I used to wash my hair every day pretty much but because of being so knackered when doing stuff AND the tunnel line needing to stay dry, I need help to shower my hair at the moment and this has meant less hair washes… and the shampoo is frikkin amazing and my hair is not greasy and has remained curly with awesome little corkscrew twizzles… So yes, another major love splurge for that shampoo! Although to be fair, not sure who else has hair as mad as mine to reap the benefits…????