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Weird time

I know I should write on here a lot more often than I do, I do most of my updates on Fanhouse and Discord now because I’m tired and it’s easier to make shorter updates.

But man, there is a lot going on at once.

It turns out I have the Cyclical form of Cushing’s, which is rarer and an incredible pain-in-the-ass to treat. They will not remove your tumours unless they are absolutely certain the cortisol is coming from them, and obviously when your cortisol excess randomly stops sometimes, doing things like sinus sampling to pinpoint the source is useless.

I had an MRI recently which was quite nerve-wracking, luckily they gave me Valium to take beforehand since I had a panic attack at my last CT. Apparently they don’t do sedated ones at the hospital I was booked at. But with Valium I was at least able to lie still and deal with it. Unfortunately it was only a 1.5 T machine so I’m not sure if they’ll even be able to see the tumour (they can be like, 1mm it’s ridiculous). A few people in my patient group weren’t able to see their tumours in scans but eventually surgery found them anyway.

It’s the waiting that’s the problem, as illustrated by my next update:
My thyroid recently failed, and I now have to take Levothyroxine for the rest of my life. 1 in 2 people with Cushing’s have thyroid problems, it’s all part of the pituitary axis. If this had all moved along faster, I probably could have kept my thyroid function. (Interestingly enough, my sister was born without a thyroid gland altogether, so she has always taken Levothyroxine, kind of a coincidence I guess).

You can go into a coma if you miss your Levothyroxine, and I’m on another kind of med that increases the likelihood of hypoglycaemia as well, so I have to get a new medical bracelet again, I decided to go for an actual MedicAlert one this time so that my info space wasn’t wasted by adding their number and my membership info. Hopefully I’ll be alright with the nickel now that various issues are being dealt with.

The Levothyroxine has at least helped some stuff though; Cushing’s obviously causes a lot of fatigue and some very painful muscle weakness. This was getting so bad for me recently, I left bed even less often than usual and I even tried an energy drink so I could cope with streaming, which did nothing. I cannot emphasise how inhumanly tired I was, even for someone used to fatigue. So it makes sense that my thyroid gave up around that time. As my friend said, “a bit of casual organ failure will do that to you.”

My skin also absolutely went to shit, with a lot of peeling and bleeding, haven’t seen much improvement in that area yet but my muscles hurt a lot less.

It’s been a month since Joop died and nearly 4 months since Freya died. It’s weird. I still sit up and look at Freya’s bed every morning, expecting her to be in it. I still stop every time I pass Joop’s tank to check the temperature and see what he’s doing. It hurts every time and yet I can’t get out of the habit.

I can’t remember if I ever actually mentioned that I made Twitch Affiliate a while ago. I somehow have 15 subscribers right now. Aside from that, still working on YouTube. I’m only a couple of videos behind now though as I’m not putting every stream up.

I know I should write on here more often. I need to update my bucket list with Vix’s recommendations from her native Canada as well at some point.

Really having a moment with this band right now.
My friend Vily gave me this absolutely gorgeous illustration of Freya and Joop. Still waiting for Will to put it on the wall but I’m so amazed by it.
I haven’t talked about Joop’s death as much as Freya’s because I’m honestly ashamed to have lost him so young. But I miss him so much.
That fabulous hypothyroid skin.

PS: Sorry if you got an email about this post. I got one last time from WordPress looking like it was from my own email address, just to tell me about the last entry; I did have an email subscribers plugin but I deactivated it a couple of years ago and I don’t know why it suddenly woke itself up.

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