Monday 21 September 2020

Preparing for infusion day


So tomorrow is infusion day, this will be my third infusion of Infliximab. I’m not feeling so far today. I’ve got a lot of stomach pain and noise and I’m feeling pretty tired. 
My prep day is usually spent making sure I’m all ready for tomorrow. For me this means picking out what I want to wear. It needs to be a top with sleeves that can be rolled up comfortable or no sleeves and a cardigan or something that can be easily removed on cold days, once I get to my infusion. 
I’ve worn my fav top for the last two infusions which is a nice loose fitting top with a star on it, which I can roll the sleeves up on real easy. But I’m feeling like this time I need to wear something different, as I don’t want them thinking I just live in that top lol. 
I also need to make sure my power bank, phone and kindle are charged, seeing as I am currently reading a book on my kindle. 
My power bank is largely a back up because my phone battery burns up quickly when I am using 3G or 4G a lot. 
I also try to get anything done, like replying to any of my penpals, before the infusion, as I can be too tired for a few days after, to be able to do this, at least with out loads of spelling mistakes and me constantly repeating myself, damn mind fog. Currently I just have one reply to do so that’s not too bad. Although I’m not sure it will go all that better today, than tomorrow given how tired I am at present, but I’ll give it a go. 
And of course housework, gotta get that all caught up. Again not too bad, the kitchen just needs a once over, and I want to clean out tweeters cage and  all his perches, that was meant to be done yesterday but I was not doing well yesterday for pain, so gotta make sure it gets done today, not that it’s filthy or anything but I just find it easier to do it when it’s only needing a light clean, because if I only did it as often as they say you are meant to, it would be so much harder. 

See they say you only need to change the sheet once a week and do a whole cage clean and disinfect once a month. Where as I do the whole thing once a week, because it makes it really quick and easy to do. Which is a must for me. So two fairly easy cleaning jobs to do, I’ve miraculously managed to get ahead of the game for once. 
I keep debating whether I should do the shopping today or not as well, we order online from Asda and this needs to be done by 10pm tomorrow or I lose my delivery slot. I hate doing the online shop, so probably better to do it today, than tomorrow, just to get it over and done with. 
My appointment is a morning one, so I don’t have much time to get things done before. Especially as it takes almost an hour to get to the hospital. 
I need to try and drink plenty of water today too, as this apparently makes it easier for them to get a vain, when they put the cannula in.
Although so far they have been great at that, getting it first time, every time. But I guess they do a lot of them on a daily basis, so must be pretty skilled at it. 
I also need to write up my little list of things I need to discuss with them so I don’t forget. Main thing at the moment is how rapidly my hair is falling out. 
I’ve also been getting a weird rash on my face, normally it’s worse on my cheeks and they get very hot. But I think that’s about it this time. 
I woke up this morning with my tongue all peeling again too. It’s so gross! 
Since I started the Infliximab I get this a lot. I already discussed that with them though. 
So that’s the plan for today. That and to try not to nap, I hate napping, I feel like I am wasting so much of my day when I do. And it takes me so long to work through everything as I’m so bloody slow now I can’t afford to waste any time. 


I also want to try and get a couple of quarts read on my current read, The dressmakers gift, by Fiona Valpy, as I’ve been approved for my first Netgalley requested book,  The moon is missing, by Jenni Ogden. 
With Netgalley you have to build up a good rep, for reading and reviewing books quickly if you want to get accepted for more. So as I haven’t used it for a while, I need to build mine back up again. I was pleasantly surprised to find that I did still get accepted for a book I had requested only yesterday, so quickly. I thought I might get a few rejections first, given my inactivity. 
I felt really bad when told my friend about Netgalley back when I was using it a few years ago. As she requested a lot of books but never got accepted for a single one. 
She doesn’t blog or anything like that but she is an avid reader. So I’m not sure why she wasn’t accepted. 
Any who, I can’t keep wittering away here as I need to get started on my prep. 
Have fun all,
Love and hugs Joss xx


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