Feb 26, 2022
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At least off those meds, I am not going to need to go through the extra routine of: * Test and probably eat something before leaving the house * Test and maybe swill some juice/have another snack before going inside the building * (Register that youāre not feeling right? Better stop and test, etc!) * Test, etc., before leaving again * Plus after getting home
Thatās what it was taking, even on not otherwise very stressful trips to the store and stuff. To avoid more āfall down on the bus/almost pass out in Tesco/partner is afraid to let you cross the road alone in the state youāre inā type episodes. Go somewhere thatās already extremely stressful and likely to fuck with your blood sugar even worse? Hahaha, good luck.
Pretty sure that wasnāt right at all. But, now Iām not really needing to carry the meter along again. May do it just in case, but yeah.
Probably too early to get much hope up, but... I haven't gotten the weird freezing cold thing going yesterday or today. Kind of chilly a few times, but more like normal cold that putting on another layer of clothes helped. A little while ago, I had to put on a hoodie, but it didn't take that long to get warmed up enough that it was too much. Unlike how things have been working for a while now. Not really normal, but improved? That would be besides only getting a little bad reaction to the sun from going to the store this afternoon. All of it after stopping taking those pills, and it getting out of my system enough for the glucose levels to be close to what they were before. I mean, the ridiculous phototoxic reactions were the main reason there. The freezing cold thing was happening some before, but that got so much worse on those meds. One of the reasons I thought it might be fucking with my thyroid function worse, like it can apparently do. (And I have had multiple symptoms which could be from hypothyroidism for a long while now, anyway.) But, this seems like too quick a change to be coming from that? No clue. I really wasn't expecting that to start improving, but I'm not going to complain. And certainly hoping it continues. *fingers crossed* That's just miserable.
Nope, not obvious that I had to miss several doses before getting a refill, and then went off the stuff a couple of days ago. :-| Creeping up from where it had been holding for a while, and then bam.
That 23.6/425 reading a little while ago was indeed after a meal. While the 15.3/275 was when I got up (and still lower than it was running fasting a lot before). The levels never got down to where they should be, but it did stay enough lower for long enough that I notice a different crappy muzzy feeling once it gets over 14/250 or so.
But, Iām trying not to get too worked up about it right now.
I definitely need to try something else, but that level of photosensitivity is just not something I can deal with. Temporarily higher highs again have got to be less bad than that.
My muscles were not quite as horrible getting up either, for a better day with less pain overall. So weāll see what happens with the stuff continuing to clear out of my system. Hoping itās not worse again when I get up in a few hours. *crossing fingers*
It really wasn't a good morning getting up, but Mr. C is gone to IKEA so at least I am no longer embarrassing myself in front of other humans. Not sure whether to try to nap some, or try to concentrate long enough to watch something. (That hasn't been working too well, either.) They didn't answer when he tried the number on the appointment letter this morning, of course. And he didn't try back. After some searching, I did find some kind of generic appointment change web form. But, that is obviously for a callback--so totally useless for my purposes. Not great, but there's really not much I can do. Also trying not to get too worked up because it doesn't look like I am going to get another badly needed GP appointment set up today, and I really can't try to go anywhere with some sun today. My face is still not right after yesterday, so yeah. Doing the best I can here, ridiculous as that may be. I'm sure he is too. Even before this further complication, there were actual reasons it was difficult to get appointments made. Hopefully I can eventually get registered for their online system. I have the form now, just have to manage to get it there. (With ID, because data protection. So I can't just mail it to them.) Still not sure if I should just stop taking the stuff after the photosensitivity BS, and also hoping that some of the other crap would let up some. Not sure it could make things worse, dangerous as that is to say. But, stressing about all of that right now really won't help. And accessibility problems are valid things. :-| It can get extra frustrating when two adult human beings aren't enough to work around some of them, though.
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Yeah, this is just unacceptable. I walked maybe 300 yards up the street to the store and back, and ended up with a burning, tingling face again. Before 10 a.m., this time of year.
No way thatās right.
In one way, I'm almost hoping that will turn into a more obviously visible skin reaction so I could get photos as evidence. In every other way? Really hoping it will just stay a little pink and go away quickly. :-| Considering whether I should even take more of that stuff. Yeah, I don't need the glucose levels shooting up again. But, I've felt worse overall taking it, and now this kind of scared me.
Yeah, maybe another reason to change medications ASAP. I was actually cautious again, and only spent a few minutes outside at a time with the (weak) sun weāve had today. Very little exposure, in March at this latitude.
But, now my arms, face, and the back of my neck have a prickly, slightly burning sensation going. Not like a regular sunburn starting, if that were possible today even with as pale as I have gotten. Itās not too bad, or at least not yet. Weāll see.
But, no way thatās normal, and it really doesnāt seem like a good sign. Especially from no more UV exposure than that.
Part of the reason I got such a vitamin D deficiency situation going before was not just the celiac malbsorption, but just not being able to make up for that after moving to the Land Of No Sun. With a āMediterraneanā UV response skin type that takes like 3-4x as much exposure to start synthesizing it, even before you start tanning at all. (And the majority of White British people are low on vitamin D.)
Even taking supplements now to fix that, being able to get out in whatever sun we do end up with makes me feel enough better mentally that itās honestly a pretty big quality of life thing living here. I just feel so much better overall, when I can occasionally get some sun. Which is what really helped get me worked up this afternoon.
(Though, with this kind of reaction? Just incidental exposure would be a problem. Walking outside to get to the bus, or whatever.)
At least the sulfonylureas do seem to be the only relevant class of meds known for phototoxicity. Even better, āindependent of dose and duration of exposureā. Which means sunscreen doesnāt really help, either.
But yeah, thatās probably also even more reason to try to get an appointment with someone other than the rather dismissive āno side effects!ā nurse who started me on it. If she was claiming that, and not mentioning some other relevant things like photosensitivity? Someone else may be more likely to listen about it.