Death Toe has been inside for 11 days now – I am on… only my fourth cannula, which for me is pretty good going as I tend to be very paranoid about infection and the second it starts to hurt get it removed asap.
This does mean we have now moved to hands, to avoid crook of elbow (least fave site) and give forearm a chance to recover. Hands are interesting. Iloprost burned, but the iv antibiotics won’t… It’s more a case of getting it bandaged up to the extreme so I don’t knock it! As you may be able to imagine, the below won’t last more than five mins at the rate I am typing! I remember *fondly nostalgic music in background* at the start of this year, when I first came in for iloprost and was locked into this ward for a week… and I had my first cannula put in and walked around as if my arm was made of precious china for at least the first 48 hours. The long term residents and staff thought it was absolutely priceless 😀 Now, except from demanding a bandage each time to stop me catching it and a bin-bag wrap before showering, I am rather casual about them and am typing away two handed within ten mins!
One of my ladies knitted me a wee mitten yesterday (as modelled below by Cannula III) so this might make the bandaged hand a touch more fashionable at least? 😀
I had a very late cannula removal last (Wednesday) night, and as mentioned had to have a shower so that I could sleep as it is so so so bloody warm in here – to be quite blunt, I am pretty sure I stink – and the infection/drug sweats certainly don’t help!! Having said that, regular temp checks are showing core temp stable, so if it is the infection it is keeping itself content with turning my skin red hot and not actually cooking my internal organs. Thanks infection!
But yep, was quite proud of myself as slept without any oramorph – bearing in mind about nine nights ago I woke up and cried as it had given me the longest sleep in several months! – I reckon I managed maybe three hours, then woke up when fave night nurse came to take blood pressure at about 5am. She was laughing at me as apparently I reacted quite violently and was swatting at her as if she had attacked me, and then mournfully told her I was having a fun dream about sliding down soggy hills being an olympic sport hahaha – so this is WITHOUT any oramorph for many many hours at that point! I then managed another good two hours before the bloody curtains (room and bed) were pulled back and my life was lit up like a fecking atom bomb -.- The best indicator of this being a natural sleep is the fact I was dreaming, as when you don’t sleep long enough to cycle through the normal depths of wakefulness (since MARCH at least) or when you are drugged up to the eyeballs, you don’t dream! Maybe some people do on morphine, but I certainly haven’t been!
Today involved making little ghosty dudes out of all of the billions of paper pots for drugs – last time it was paper cranes. They still actually have one of my cranes at the main ward desk 😀 I need a crafty friend to demand these off me, as there are hundreds being used and it irritates me!!
Quite early on, I had a lovely drop by from my parents down from Scotland late last night – they swooped in to steal washing and we had a quick catch up in the day room, as it was outside of visiting hours, after which I had to give in to oramorph as I maybe over did it showing off and being excited to see my Mum… Oops! I basically just passed out for a few hours and woke up and made above ghosty dude and then zonked a bit more. Did I mention it is warm in here?? Even with open windows, I am pretty sure we are being kept compliant through heat exhaustion!!
My wonderful inside-friend came up to see me after her shift and was a little peeved I had chosen then to shower, as it was a good gap between the latest iv and dinner time (tea time, whatever)… She was told I was in the shower, so sat in the corridor to wait for me and was blessed with the wonderful image of me scooting very slowly forwards out of the door (fully dried and dressed except my socks…), with my feet on several towels to keep them off the floor 😀 The reasoning being firstly that Death Toe dressing has to stay dry. When in the shower I have a very attractive plastic leg case thing, but once that comes off, PARTICULARLY in a wet room, it is a nightmare keeping the dressing dry! Not only that, but the floors will be covered in chemicals – and I am possessed of princess skin – and wet room floors are COLD and the cold bloody hurts when you have poor circulation. The ward floors are a bit too chilly as well, even through fluffy socks and then the stupid non-slip things! But yes. I can imagine it looked a little daft, especially when she then pointed out I had carefully got myself out of a soaking room and left my socks on the window sill 😀 I would be lost without her haha 😉
She then proceeded to sit with me whilst I had dinner and (probably still a little under the effects of the oramorph earlier) I was on fire. Not literally, the shower had cooled me down. But I was being a mega ditz and managed to very carefully fill the little plastic cup holder full of water, effectively flooding my table… She was JUST too slow to stop me! Also got very upset at veg of the day (served with a rather dry, but otherwise edible cottage pie) being cabbage. AGAIN. Sort your shit out NHS. Cabbage is NOT AN APPROPRIATE VEG OF THE DAY!
Parents came back later for evening visiting hours, having spent the entire day carefully photographing every inch of my new house, so they can coordinate with me over decisions on where I want sockets and radiators and things whilst I am incarcerated/morphined off my face/pretty bloody crippled. This is by no means the first time one or both of them have spent hours and hours on that house for me – or other wonderful parenty things like fixing up a slightly duff car for me and making sure I have oodles of fluffy socks. It is pretty awesome having family and friends who are so caring and supportive; I know from a discussion a few of us had today in the Vasculitis UK facebook that a lot of people with vasculitis (and obviously chronic illnesses in general) can really suffer from a lack of support or relationship breakdown post-diagnosis, and it is quite humbling when I think of how lucky I have been 🙂
*crowd either says ‘awwwww!’ or vomits at how sickly sweet that just got*
One of my really close friends also came to see me this eve – she has avoided me for a few days as she was a germ-machine and didn’t see the need to infect me in my immuno-compromised state, which is very thoughtful 😉 It was pretty fab to see her and she brought with her a sweet colouring book (sweet in the most slang sense of the word hehe) and the above featured monster pencil case which is obviously exceptionally fabulous. Also provided were instructions from her wee lass on operating the velcro mouth flap and the image of her carefully picking some fab coloured pencils to fill it and then begrudgingly handing it over; understandably! Who the hell ever wants to give away stationary?? The card that came with them is… polite. It wishes me a speedy recovery and is signed from friend, friend’s Mr, friend’s wee lassie, princess dog, wabbit and tortoise… All quite standard, except that usually the cards I receive from that household are SO rude or inappropriate that they have even caused arguments between my Dad and I; I had one on display at home once that featured a certain word repeated many times, received when someone had upset me one day and I was feeling emotionally bruised… The whole house, animals included, have known me as Phyllis for many many months now, as I was the recipient upon first becoming ill of a card that read something like ‘at least it isn’t syphilis… – except it totally is’; after which they all decided that Phyllis was about as close to syphilis as names get and will go so far as to order things for me under that name. I answer to it now without even blinking 😀
I would like to leave you two wonderful images. The first is my Dad walking down to the day room with us, so we could all sit and natter without being too disruptive, and suddenly lurching sideways and grabbing two of the purple medical gloves out of the wall dispensers that litter the hallways, and stuffing them in his pocket. When I looked a little horrified, he quite defensively pointed out that they would be used to change my oil filter tomorrow, so I had to shut up at that point really… 😉
I also have a lovely (if not exactly medically accurate) bit of imagery, which I just found scribbled down from when mitten friend was visiting t’other day (expanded on by myself for the sake of context):
Digital ischemic ulcer formation starts from the tiniest bit of damage to the skin at the tips of fingers and toes. As the circulation is then so poor – due to the tiny blood vessels inside being fucked up, this doesn’t heal and slowly the skin breaks down further around the initial site of damage and effectively dies from lack of oxygen and normal regeneration processes. They obviously can then get really nasty and infected like Death Toe. Now mitten friend has SEEN those pictures and she knows just how vile Death Toe has proven capable of being…. Yet she still chose to summarise ulcer formation as being like the process of a speck of grit in an oyster forming a pearl. Words utterly failed me 😀