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Health & Personal Update

Picture from Pixabay, because pretty.

Still struggling with iron defiency. I’ve been taking oral iron supplements for 11 months now and my ferritin levels haven’t improved practically at all. It got from 9 to 21 to 18 and then stayed there, and then the iron supplements finally in mid-September started to make my Crohn’s Disease symptoms worse so I had to stop taking it. My ferritin should be at least 100 because of IBD to be sure that the iron levels are sufficient. Going to have to talk about this to my doctor in my yearly check-up at the end of November. Ideally I should be given an iron transfusion because the oral supplements aren’t effective and I have IBD, but doctors are extremely reluctant just generally to do them; most of them don’t even admit that ferritin has any impact on the body and a person’s well being. So it’s a continuing struggle. I have so many problems (exhaustion that never goes away, daily headache, chronic migraine, memory problems, weakness in limbs, joint pains etc.) that might be helped with getting the ferritin up properly, especially the head pain and exhaustion and I’d like to find out if an iron infusion could help my quality of life.

Otherwise I’ve been much the same as all this year – same level, lesser Crohn’s symptoms since I changed the dose and timing of Agiocur (thanks for the tip, gastroenterologist!) in last November so I’m glad about that. But still daily headache, exhaustion. On the other hand, my sleep’s been a lot better (no waking up a million times) and my insomnia is better – I can usually fall asleep now when I go to bed, for some reason – don’t ask me why – I don’t know! Still sleep about 11-14 hours a day though (without any dent in the tiredness) unless I have to set the alarm because I need to be somewhere. And a few days a month I sleep for 22 hours, only waking up to take my meds during that time. As for my day – I’m usually awake 8-12 hours. It’s been like this at least since 2010, but apparently it’s normal to be tired and sleep a lot when you have IBD, according to gastroenterologists that I’ve complained to. I just don’t get how I’m supposed to work feeling like this so it’s a good thing I’ve been unemployed ever since I got ill.

I dyed my hair red with henna about a month ago, and that’s lifted my spirits 😀

Haven’t felt much like doing site work in the last several weeks, just haven’t felt like it. Also haven’t had energy for creative endeavours since the heatwave broke, I guess recovering from it takes its time.

I’ve been reading a lot this summer and fall and I’m so happy about that! 😀 I’ve been reading Minette Walters’ thrillers, re-reading actually, some of the oldest of them such as The Sculptress and The Scorn’s Bridle (I remember seeing these as tv series!). I’ve also been reading scifi novels: Semiosis and Interference by Sue Burke and Ancient Night by Elizabeth Bear. Also read two books by Tiina Raevaara who is a Finnish novelist who has written at least two scifi leaning novels. Not sure about her earlier ones, I have them from the library but need to finish Ancient Night first. I’m on a scifi kick again, just wanting to read scifi, scifi, scifi! 😆 I felt the same way last year too for a bit. Then earlier this year I mostly read Ann Cleeves and Elly Griffiths and other thriller/detective novels. I’m only on my 30th book of the year at the moment – last year I made it to 50. But for the first time I don’t mind having more than one or two library books on my bookshelf waiting to be read, and that feels good. Back a few years ago when I couldn’t read anything new for two years, once that started to let up, for the longest time I could only have one new book waiting on the shelf – if there were more I’d panic and not be able to read any of them. I still can’t have more than say 7-8 new books waiting, or I start to panic again, but it’s better than it was two years ago. I wonder what’s that all about? Books have always been easy for me, a refuge. I used to have like 15-30 library books at any time at home, reading 3-4 at the same time before that weird two years when I couldn’t read anything new. I didn’t keep a list of books read back then, so I wonder if I used to read more more books in a year back then than I do now?

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