God I miss winter! Hence the picture. It’s from Pixabay.
Heat wave is not much of a wave anymore – something that comes and goes like in summers of the past. More and more they just come and stay 😕 Summer’s barely started and we’ve already had 21 heat wave days this year 😐 Today’s going to be the hottest day so far in my city, 31 Celcius. It’s not yet 10am, I’ve already had the fan on for hour and I’m already so done with today, it’s already much too hot… how the hell am I going to make it through the day? I’m on the very edge of a migraine attack and my head feels nasty, and there’s noise outside in the distance and sometimes closer that sounds like maybe the grass cutters will come around. Hopefully not today, those drivable machines make a horrible noise and my head really, really can’t take it today, and I’d have to close my back door and windows to make the noise bearable which would make my apartment feel like that there is no air because it’s so hot inside.
In the Finnish Crohn’s Disease Facebook group there are people there whose symptoms worsen a lot during hot weather. I haven’t noticed this myself before, but the last few weeks it’s been a tiny bit worse. But my symptoms vary enough, come and go, that I can’t be sure. Just that this latest while of a little bit more active symptoms happened simultanously with the hot weather.
I haven’t slept in about three weeks now. Part of is the hot weather no doubt, but mostly I think it’s my iron levels… namely the lack of them. All I get is about 30 mins of sort of maybe kind of lousy sleep, that doesn’t feel like I slept at all, totalling about 2-3 hours. Mostly I think it’s because my ferritin is still much too low, close to zero, and the last time I slept this badly, the ferritin was about the same as it is now. I slept much better when it got over 30, but when it was 43 the doctor said I can stop taking iron every day and to only take it during my period. I’ve read that IBD patients should have ferritin the minimum of 100, but the doctors here don’t seem to know/believe that. 43 is the highest mine’s ever been, and that lasted only about year – as soon as I stopped taking it every day, it came down to 9 (and CRP was 14 so it propably was/is closer to zero actually) within the year.
Now I’ve taking iron again since November, but it’s got up only to 21 which is what it was for a decade at least and that’s when I had so many bad sleeping problems. Not to mention terrible tiredness. Tiredness has never gone away, but sleeping was so much better for a while when the ferritin was around 40. I hate that the doctors ignore ferritin so much here, they don’t really know about it or believe that ferritin actually does anything, and that ferriting being 15 for women of childbearing age is totally okay! (Their own Doctor’s Handbook states that ferritin under 30 is empty and needs to be fixed but somehow that doesn’t count) But that it’s bad if men have it so low because their ferritin is apparently supposed to be like 150 or more 😯 Iron infusions are almost impossible to get unless you go to like one of the about five doctors in the entire country (who have private practices) that understand about ferritin and do infusions if oral iron supplements don’t help, or you can’t take them. If you pay out of pocket for everything, of course. Even IBD patients who aren’t supposed to take iron orally by the Doctor’s Handbook are told to take it orally and if they can’t, well too bad! Never mind your quality of life, and never mind if literally the only things you can do is go to work and sleep, because you’re so tired all the fucking time. Only extreme cases iron infusions are used in treating IBD patients. I bet if men had systemic problem with low ferritin it’d be taken seriously in the public health service and by doctors in general 😐
Jeri Ryan Site
This past week Claudia, the owner of I Heart Jeri Ryan donated her content to my Jeri site, because she closed I Heart Jeri Ryan down due a personal loss. She has some things that I don’t and it’d have been such a shame to lose them. So I’ve been uploading her things (and will continue to do so in the coming days, as I go through Claudia’s things), and I’m happy to see my Jeri gallery now even more complete 😀