So with this being a new place for me to gather up my waffling, I went back a few months and scraped together some of the posts I had started littering facebook with. This was before I found the Vasculitis UK facebook group, which dramatically lessened the need to spam friends and family. Captive audience!!
I had started whining about aches and pains on facebook as far back as January 2015 approx, which was when I first had a toe ulcer and began to feel distinctly not right. It wasn’t until that summer that people were more widely aware I wasn’t well. I then started to try and find a balance between boring the shit out of everyone and educating them about (initially) how I was feeling/what I was dealing with and then post diagnosis, what the condition is and how it affects me.
Going back to the start was NOT going to happen, as I am prolific facebook poster and it was taking a long time… So I have simply gone for a snapshot of June to August 2016, which happens to include the second week (this year) that I was in for an iloprost infusion. Most recent first, because life is to short to rearrange it all now.
12.08.16 [swab 0f Death Toe post-incarceration]
You learn a lot about yourself when submitting to someone poking around at your excruciatingly painful digit… She started the conversation off with “would you like morphine first?” – and I said NO 😣 …because I have to drive home. So A) I am a fool who turned down morphine and B) I am overly responsible regarding driving whilst not super floaty. Then whilst the evil was occurring, I didn’t bite or kick her – or the nurse holding me and my other, otherwise free leg down… I bit my OWN HAND REALLY FUCKING HARD 😣 C) …Twat. Finally, of all the swearing I could have come up with, I go for “shitting… ducks… bloody shitting ducks” – Why?? D) WHY DUCKS???????
Why phones should be removed from people in hospitals… Didn’t remember this, or the bit about unicorns or glitter until someone was laughing at me yesterday 😄 Apologies to everyone who received drugged up messages at random hours last week!! Remind me of any promises I made as well 😉
02.08.16 Tuesday mornings are intense!! Not even a single vitamin in that lot 😂Getting so good at necking pills
A few days after (very apologetic and friendly) stabby happy Doc took a few goes to cannulate me, this is my current favourite bruise! Absolutely gorgeous shades of purple, with just the teeniest smidges of green left 😀 It doesn’t hurt at all – is it wrong to find a bruise so fascinating??
Playing ‘bit of melty chocolate orange or poo?!’ is a much more extreme sport on Ward 7…
[This is a good example of me being a leeeetle bit high on painkillers haha]
Gentleman down the hall is kicking off because he wants a cheeseburger and “all the other McDonalds do them!” Nurse is muttering “I wish it was a McDonalds too mate…”
Just had the treat of hearing two women in their 90’s discussing blood tests – one of them used the expression ‘just a little prick’ – and they both started smuttering away to themselves for a few minutes 😂 The fact both are pretty deaf and the conversation is being conducted loudly and slowly is just making it even better
Cannula Two… Took three attempts, three different places. The doc got really ashamed of himself – I feel quite stabbed 😣 Hand isn’t ideal as smaller veins so going to burn more going in and last time my hand went mega swollen. Balllllllls!!! 😑
He ain’t goin nowhere!
Hahaha this very nicely portrays waking up mid-iloprost when someone jacked it up to level four whilst you were out of it…
27.07.16 at 5.55am
Just washed my hair before everyone else on the ward starts getting up and cleaned. Doing this with one arm wrapped up in surgical tape and a cut up laundry bag to keep a cannula dry is incredibly hard… When the shower hose is a bit ducked and cuts off unless held at the perfect angle… Well 😕 It just took me about 30 mins to shower!! Not even using conditioner!! Felt miles better last night – managed an hour of four and then dropped down to a three again for the last two hours – and highest is five, not six. Not that anyone particularly gives a monkey 😂 But means I got a bit closer than I thought and last time I did a five and it was insane, so never again! More sleep too, ‘cos started off earlier. If arm is ok to be wrapped again, should be allowed out to work! Shout out to Ward 7 nurses for being generally awesome 😁
Sooo! I managed night one… The infusion goes 1ml/hr up to 6ml/hr – Started off at 1 and increased up to 4 in half hour increments. Bearing in mind this is between 11pm and about 2am… 4 was ridiculous and I was a sweating migrainey mess of whimpery goo and my blood pressure was being silly. So went back down to 3 then 2 and have decided 2 is pretty much the highest I can sleep through to any extent. Although when someone is taking your pulse, blood pressure, checking for responsiveness etc every half hour, sleep is a bit of a misnomer!! The staff are all awesome and a lot of them remember me from last time I was incarcerated. The night nurse doing my checks last night is so lovely – for someone effectively torturing me for nearly 8 hours, I felt the need to apologise to HER later on at 5am (shower time!) in case I was mean whilst I was knackered 😂
Bed ready in Ward 7… Cannulated up (Non-mouse arm, with the hope I can get a day pass out to work each day… That is going to be very fun for all involved!!) Had ‘The Last Meal’ (hospital hotpot!) before the iloprost makes me so queasy all I want is the salt licked off s&v pringles… Want some already, maybe a bit of a conditioned response to the Ward?? Already met some fabulous people in ACU – one lovely gent vastly amused at how colourful all my clothes, phone case, bag etc are – “Pink! Look at it! PINK!” Just getting settled into the Ward now, quite a quiet bunch… Hoping this doesn’t portend lively midnight madness when they all wake up!! Last time there was an escape artist who got put on bed watch as she kept trying to do a runner! Don’t think I’m getting drugged until tmrw afternoon now, so I can manage work in the morning?! Cannula is blue this time. Quite a fetching colour, bit more sassy than the pink ones!
P.s…. Shout out to Katie once again for fetching my bag and generally being an awesome inside buddy!!
P.p.s…. drugs start tonight 😮😮😮
25.07.16 So proud…
Full on lost my shit this morning and bawled all over the whole office, after the rheumy doc told me to go into GP *immediately* as twatty arm was either an infection or a blood clot… Too sore and tired for that kinda crap right now! Turns out its much more likely a buggered tendon, so I get industrial strength pain gel and some extra blood tests for funsies!! Tonight I will be celebrating the absence of blood clots, not having to start antibiotics this week aaaand some very patient colleagues 😉
This is ma ting!! I’ve got the autoimmune (non Hep C) version, hence the methotrexate
Quite appropriate timing for this to be popping up whilst waiting to see if the Meth is mauling my liver etc – before taking the second weekly dose later today! Brain fog people… I have an excuse to be a little airy and vague at the mo 😄😄
Eeeek today is methotrexate day one!! Gonna go pick up some meth later
Today’s FIVE AND A HALF HOUR rheumy appointment had its highs and lows… Bad bits: I’m still trying to destroy myself and the current drugs aren’t exciting enough so I need to start methotrexate. Good bits: I can shorten that to meth and go pick up a meth prescription 😂😂😂 Also, free lunch…