TW: surgery, illness, death, hospital admission, medical PTSD
I’m still alive! I’ve had a couple of messages on my blog asking if I’m ok because I’ve been quiet on here so I thought I’d write an update. It also made me think about why I haven’t felt like writing an update until now.
Part of it was a lot has happened and so in my head I thought “I’ll just wait until I know what’s going on a bit more, then I’ll blog”, but then something else would happen and I’d just keep repeating the same thing over and over.
The second part of it was I wasn’t in the right head space. I’ve been a combination of mentally tired because of everything that’s been going on, not very with it because I’m on strong pain killers after my shoulder surgery, and having a bit of a crisis of confidence/didn’t want to think too much about things because I’d get sucked into a massive angry/paranoid rant in my head. More on that later.
Here’s a (long) summary of the last 6 months!
I had surgery before Christmas to stabilise my left shoulder to stop it from dislocating spontaneously. The cortisol pump I was on afterwards failed so I had an adrenal crisis, which set me back a fair amount so I had to stay in hospital for longer. Missing the steroids at that crucial time caused me problems in the time after hospital/before Christmas with my tapering and I was struggling to even taper just a little bit from my double dose back down to my baseline
Every time I tried to do a taper, even just 1mg, I came out in hives/scales on my skin, I got massive sores in my apron area, my eyes got really itchy/stingy, I swelled up a lot (angiedoema) and I got gastric issues and pain. Along with all the “normal” low cortisol symptoms of fatigue, dizziness, feeling sick, brain fog, heart issues…. etc Two more consultants later (ophthalmologist and dermatologist), it turns out I have psoriasis and blepharitis, which are inflammation conditions which get worse with stress and, unhelpfully, when you taper steroids. My body reads stress differently to normal bodies because I don’t make the hormone, and the biggest most obvious stress there was, was the fact I was recovering from major surgery.
Stress for me also means having to do more things physically than normal. When you can’t see properly (blepharitis), your skin hurts when your breathe (psoriasis) and you’re having to do everything one handed (surgery), that’s a lot of extra “stress”. On top of that, we also started the building work for my space in the house to make it more disabled friendly. Which unfortunately meant everything had to get a lot less disabled friendly in the short term for 7 weeks. I was sleeping in a different room, nothing was kept in the same place or easy to get to places, there was stuff everywhere, we all had to change our routines… a lot more physical exertion, a lot more “stress”… I should have been increasing my steroids to deal with all that but instead I was trying to taper.
I hate bloody tapering. Before my op, my endocrinologist did what all my endos do when they first meet me and say “your problems are all caused by the steroids you took for your asthma over a decade ago, your adrenal gland might wake up if we slowly taper your steroids. Let’s do that. If we don’t do that, then you’re going to lose function in other glands and systems in your body. We’ll get you off steroids in a couple of years”. I’ve been here a lot, and my very good endo from The Midlands did a lot of investigating and concluded that my adrenals are highly unlikely to wake up because I’ve probably always had adrenal insufficiency to some extent, and taking steroids for my asthma killed my adrenal glands off completely. In other words, I got diagnosed around the time I was taking steroids for my asthma, but that doesn’t mean I have it *because* of the steroids for my asthma. But in any case, I’ve now been on steroids for 12 years… I think my adrenal glands are definitely dead now!
But, because of the way doctors are wired, and (I guess I have to be fair to them a bit) because they’re used to patients trying to get out of doing hard stuff or panicking about tiny things, you can’t argue with them when they come out with this plan. Even if I’ve done it 3 or 4 times and failed. Because then you get labelled an awkward/obstructive patient. So I agreed to try tapering to as low a dose of steroid as I possibly could, because I do agree with them that being on the lowest dose you can is better overall for your body. It’s not a nice process though, it’s failed every other time I’ve tried it, my adrenal glands are still dead and you feel absolutely horrific the whole time.
This was now made a million times harder because I wasn’t just tapering from my stable position I was in before the op, I was trying to do it afterwards, when I had a million other things to fight with. Something had to give, my body wasn’t coping with the hives, psoriasis, swelling, major surgery and gastric issues, so my body decided to add something else into the mix and I started having hypos.
Hypos are when your blood glucose level drops below a safe number and you have symptoms of shakiness, feeling faint, fatigue, brain fog… they’re dangerous and can kill you. They’re also a symptom of low cortisol and often are a precursor to an adrenal crisis, which can also kill you. It could be a whole blog post in itself, especially because of Hamish my medical alert dog being amazing at helping me with them, but the gist of it is that I worked out that they were linked to my steroids and tapering, it didn’t matter what I ate to keep my sugar level up, I still had them and that I was having them whenever I physically moved even only slightly.
The next few months were a bit of a battle, both with trying to keep my sugar up and not dying in my sleep, but also with medical people. Before I was diagnosed with AI, I’d go to my GP or a&e at least once a week and say the words “I feel like I’m dying” and “I have a feeling like this is going to end badly” and no one would listen and everyone told me it was all in my head. It turns out I was actually dying and fluke kept me alive. I had that same feeling with the hypos. Thankfully my GP here knows me and knows if I say something like that, I’m not just being melodramatic. Problem is, it’s out of their depth and they had no idea what to do with me. Neither did a&e or the assessment unit at the local hospital. They rang my specialists in Newcastle who gave me an appointment with a registrar, who immediately went down the “you’re fixating on numbers, you’re fine, it’s all in your head, you should carry on tapering your steroids” route and told me all the info from my GP and dietician was wrong and I “wasn’t in any danger”. Unlike last time, I actually know a lot about the endocrine system, so I wasn’t going to be fobbed off. I had a mini rant, she got her boss (but not the top boss/my endo, he wasn’t in that day) who eventually agreed that something wasn’t right but he didn’t know what to do with it either so I should just “keep doing what I’m doing”.
Which gave me two big problems: I didn’t have a clue what I was doing, I was making it up as I went along and fire fighting. And secondly, it started off a head spin of “this is what happened last time, no one believes me, they all think I’m an idiot and making it up”. I’m still pretty traumatised from when people let me almost die many times before they took me seriously and it seemed like the same thing was happening again. The most scary thing is that the doctors who are saying I should continue tapering my steroids and I’m “not in any danger” are also the ones who have the power to put things like “do not give extra steroids” on my record. Which is absolutely terrifying and is something I have nightmares about a lot. The registrar changed my diagnosis to “steroid dependent” rather than “secondary adrenal insufficiency” which isn’t quite “do not give steroids”, but if you get an inexperienced medic reading it, they don’t want to give steroids in an emergency, so it basically is “do not give steroids”. Which, again, is terrifying, and has happened many times.
In actual fact, the registrar made me have steroids training with an endocrine nurse, who only talked to me for about a minute before she said “you know what you’re doing” and completely understood me needing “adrenal insufficiency” put back on my record. She told me to ring her directly if I had any problems or if my GP needed advice. We like her a lot!
It turned out fine in the end, but at the time, I was having to do a lot of mental work so that I didn’t completely fall into a panic about it all, and that meant I couldn’t manage to do a blog post. I essentially have PTSD from what happened leading up to my diagnosis of AI and I could feel everything starting to boil over. I still have hypos, but nowhere near as bad or as often because Hamish can now alert to them so I can head them off or only have little ones now. Which is absolutely amazing!
It’s only in the last couple of weeks that I’ve started seeing light at the end of the tunnel- I’m still tapering but I’m not pressuring myself to do it quickly, Hamish is amazing at his alerts now so I trust his judgement completely, our building work is almost finished and I’m getting some treatment for my eye and skin issues. So everything is still a bit chaotic, but it’s a more positive version of chaotic!
I’ll try not to leave it as long between blog posts next time 😉
okthenwhatsnext 