A long overdue (and rambly) update

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 😉

6 weeks since shoulder stabilisation surgery

CW: surgery, hospital, disability, recovery, physical rehab

This time 6 weeks ago I was settled on the ward in hospital after my op. It’s gone both quickly and slowly at the same time. I had 6 days in hospital immediately after the op because I had a couple of adrenal crises and then came home on a double oral dose of my steroids. After that, I don’t really remember an awful lot of the next month, partially because I’d had pretty major surgery and was recovering from anaesthetic and pretty drugged up on opioids. But also because my adrenal Insufficiency makes me feel quite foggy on a good day, let alone when I’ve got healing a joint going on in the background.

I felt sore from the operation but nothing like the pain I had after I dislocated my shoulder once and they hadn’t put it back in properly (for about a year!) I could keep on top of it with pain killers so that it still hurt but wasn’t the all consuming pain it was before. It was “normal” pain. It got a lot worse when I did things like getting dressed or getting in and out of bed. So I pretty much lived in my PJs and sat on the sofa for the first week I was home.

I’ve dislocated that shoulder enough and had to be careful with it for so long that doing things with one arm kind of became second nature to me beforehand. Even if you’re not using the shoulder itself, the muscles around it and your core muscles are regularly engaged to do things, including when you’re using your arm on the opposite side. I’m seriously glad I’d been going to a fitness class designed for people at risk of falls, because it had helped me build up some core strength beforehand. Otherwise I’d have been in trouble! The things I couldn’t do to start off with were tasks like opening doors, opening car doors, putting on my seatbelt, cutting up my own food, lifting “heavy” things. You don’t realise how much you use your shoulder/core muscles to do these things, even if I did them with my right hand. Eg opening the car door with my right hand still caused me a lot of pain in my injured, left shoulder. But I was prepared for those because of having dislocated it so many times. Some tasks meant I would automatically have someone with me so they could help eg going in the car. Others I could buy an aid eg a seatbelt tag so I could pull it over myself. But the one thing I couldn’t get an aid for and I didn’t want people helping me with was personal care, like pulling up my trousers and actually going to the toilet and cleaning up afterwards.

It shouldn’t have been a problem because the county council were supposed to have fitted my disabled bathroom with a Closomat toilet which washes and dries you. But like most council things, they never stick to their schedule and it got fitted a couple of weeks after my op. It was still useful, but would have been a lot more useful as soon as I’d come home! I already had a comfort height toilet installed , which is slightly higher than a normal toilet, and grab rails next to it, which made a massive difference. You need to use shoulder muscles a lot getting off the toilet!

Other aspects of personal care that were hard included brushing my teeth, putting on clothes, washing etc but I overcame these by getting an aid to squeeze toothpaste tube, buying big and baggy clothes and using wet wipes and a flannel and a bowl of water since I couldn’t get my wound wet for a month. I didn’t feel remotely clean for the whole time but showering wasn’t an option because of where my wound was, so it was a bit like having a sponge bath when I was in hospital. I got some absorbent cloths (my right hand got tired wringing out flannels)and a sponge with a handle on so I could reach bits where I couldn’t move my left arm enough. I managed to find some shower caps which washed my hair without water in about 3 minutes. These are a genius invention which one of my hospital friends on my ward told me about. I paid to have a hairdresser wash my hair once but these shower caps were a godsend! Again, still not the same as an actual wash, but better than nothing!

I bought some baggy nighties and wore those for the first few days because trousers were hard. Because I’m overweight, the last bit of pulling up trousers on the left is hard purely because there’s a bulge of body at my hip to get over which I couldn’t reach. I’d lost a bit of weight since my last dislocation so it was slightly easier (less flab) and I could almost do it if I tried really hard but my adrenal insufficiency would complain from the effort required so I tried to avoid it. Which is a problem when you have a hormone condition which makes you wee a lot! After a week or so I managed with tracksuit and pj bottoms. I just abandoned some things completely (and some I still can’t do) like putting on a bra, putting my prescribed cream for my psoriasis on and doing anything with my hair. If it didn’t *need* to be done, I didn’t do it for a couple of weeks. Which even included brushing my teeth for the first few days!

Other things were already in place for me because of my regular dislocations so I just relied on them more. One of my parents made all my meals for me and cut them up. They gave me my pain killers at the right times and made sure I was awake for my steroids. They set out my clothes and washing things and tidied up. I already have a lowered and narrow sink in my bathroom so I could reach it and try to wash my hands because normal sinks require too much leaning forward and reaching to get to the tap. I have lighter weight mugs and use a plate bowl and have water bottles where I hold a button to drink so that I could drink without spilling it everywhere while lying down. I have a sit to stand armchair which helps with getting up and down and a “sit-u-up” device under my pillows in my bed which raises your upper body up with a remote control. I already had a lot of different sized cushions I could use to prop my arm up on in bed and on the sofa and in the car.

I got told to avoid moving my arm anywhere beyond neutral and away from my body but across my body was fine. I wasn’t to try going up over my head unless I was doing physio. I had a lot of swelling in my arm and hand and the biggest, colourful bruises I’ve ever seen. My entire left boob was essentially a bruise at one point! I had to try to move my hand a lot to get the swelling down so had specific exercises to do, which were things like holding my left hand in my right hand and moving my right side gently to do things like moving it up and down and from side to side or pushing it away from my body, sliding it on a table. They were bloody exhausting which felt pathetic considering how basic they were. But you’ve got to get the joint moving to stop it from seizing up while also protecting it so you don’t damage the work the surgeon did.

The table slide exercises causes me a few problems because my wound kept bleeding. Nothing dramatic, but the scar runs from my collar bone down by chest under my arm pit – it looks like where you’d cut my arm off at the shoulder. Under my arm, there wasn’t enough room to get another staple in because of the angle so certain movements like getting dressed and table slides opened it back up again. You also can’t really get a dressing on under there because I couldn’t move my arm away from my body and the more it bled, the more I needed to change my clothes, which made it bleed more. I got the dressings changed and cleaned properly with gas and air as pain relief in fracture clinic once as part of my routine check up and staples removed, and another time at the GP with the nurse when it got worse again. In the end, I stopped doing the table slides and avoided getting dressed for a few days until it healed enough to stop opening up.

My surgeon had done a lot of preemptive/prophylactic infection control measures because getting any kind of infection is very bad with adrenal Insufficiency so we were super on the look out for any signs. One weekend, my temperature went up to 38.2 and I’d had more bleeding than normal the day before so we rang 111 (the helpline for when you need medical advice but you’re not dying enough for a&e/the ER and can’t get hold of your gp) who were really thorough and told me to go to a&e within the hour in case I had sepsis or a post op infection. A&e were a bit hit and miss in that I went from one medic thinking he was going to admit me as an inpatient because of my blood work showing slight infection, to being sent home without any treatment. The compromise was going home with oral antibiotics for a week to blast any infection which might be lurking. After all the efforts my surgeon went to, I wasn’t going to risk an infection.

One of the contributing factors to having the antibiotics was Hamish, my assistance dog in training. He’s learnt how to alert to my condition changing fast so I can do something to stop myself getting ill. Sometimes I just go and lie down or stop whatever it was I was doing, other times I take more steroids. In the days leading up to the trip to a&e, he’d been acting weird. If a dog hasn’t been trained to give a formal alert eg nudging you with their nose or paw, then they tell you something is off by acting strangely because they don’t know how to communicate it. One night he’d woken me up and I couldn’t understand why, but when I checked it was because my temperature had gone up by a degree. With the maybe/maybe not infection, I’d had my “something’s coming” feeling and he’d also been acting oddly, so we decided antibiotics would be the safe option.

Having Hamish, my assistance dog in training, was actually a god send. Ideally he’d have been more trained than he currently is, because my op got brought forward by a year. But he really stepped up to the job with what he could do. His alerts were actually really helpful and gave me good information as to whether I needed more steroids or not. It took the pressure off me constantly assessing things, and, even though he’s not 100% reliable, it freed up some of the space in my brain I’d usually spend scanning my symptoms so I could just focus on resting. If he wasn’t worried, I wasn’t. If he was acting oddly, I paid attention. During my recovery, he’s done lots of little alerts which has helped me gauge how fast to do my tapering but he’s also shown me when my temperature was going up and when I’ve been having a hypo. Neither of which he’s been trained for. He’s so clever! He also meant that I could get dressed and (after a month) have a shower without my mum hovering outside the room. If I needed help, I could tell him to “find Ernie” and off he trotted. For some reason, he’s currently rebelling against picking things up from the floor which he knows how to do. He’s just point blank refusing to do it. But he has been enjoying taking my socks off for me and is getting better at helping me take off cardigans and jumpers.

Once I’d resolved the bleeding under my arm, the actual recovery of my shoulder *touch wood* seems to be going smoothly. I had most of the clips/staples removed after 2 weeks and the ones under my arm left for another week and then removed. I had a follow up with my surgeon after 3 weeks where he x rayed it and said that the joint was solid and healing well. I was allowed to take my sling off at this point too, which was confusing because the hospital ward were adamant it had to be on for 6 weeks but I’m managing fine without it at home. I still wear it when I go out though because I want other people to see that it’s injured so that I don’t have anyone trying to “help” me by grabbing it and making me slip and fracture my pelvis (which is what happened before). I started physio 10 days after the op and seem to be making good progress there. I still have nowhere near normal movement and I find it hard doing normal things eg long sleeves, but everyone says I’m doing well. Sometimes it clunks or spasms in the same way it used to right before it would dislocate, which it obviously can’t do now, but it still freaks me out. It’ll take a while for my brain to correct itself because until now, the risk of dislocation meant adrenal crisis and potential death, so I’m obviously going to subconsciously get anxious when that happens for a while.

On paper, it looks like I’m not doing so well with my adrenal insufficiency because I’m still tapering from my stress dose, and the guidelines say I should’ve gone immediately to baseline within 48 hours of the op. That was never going to happen and I had a few setbacks anyway- 2 adrenal crises and a possible infection are reasons in themselves to be stress dosing. I also used Hamish as a way of working out when I could taper because while he was giving me 2 or 3 alerts every day, it would be stupid to taper. I’m viewing it as a success because even though I’m only half way through the taper, I haven’t felt like I’m dying and been falling asleep every 10 seconds like I have done in the past while tapering. I haven’t felt my “I might need hospital” feeling and I haven’t had to increase it again. Slow and steady wins the race and all that 😉

I was fortunate enough to have a month’s notice for surgery and already knew how to adapt to one armed living. Things like Christmas shopping and Christmas crafting I crammed into that month before and got everything set up so I could come home and function as much as I could and my mum took time off to help me. We had the added drama of dad (who’s my carer day to day) falling on ice and breaking his wrist, which effectively meant my carer needed a carer. I heavily relied on my mum to help me (thank you!) and I still need help now but I’m slowly managing to do more for myself, which is good because I’m stubborn and want to be as independent as I can!

Full recovery can take between 3-6 months and some people don’t get full motion back. I know I’ll take longer to heal than the average and I didn’t have full range of motion before so if I get any of that back it’s a bonus. I’m quietly confident that things are going ok at the moment – touch wood!

It’s Operation-Eve

I’m having shoulder stabilisation surgery tomorrow to stop it dislocating at random times. I’ve got many health problems that make anaesthesia and trauma risky, one of which is adrenal insufficiency

I’m surprisingly calm. I’m still anxious, I don’t think anyone would relish the thought of an operation, but at the moment I’m seeing it on the same level of anxious-ness that I would unpleasant tests.

My assistance dog in training is doing his “sniffing around looking for a specific smell in his toy box because something smells off” and whining thing. Which he specifically only does when I taper my steroids. I’ve actually taken double my evening dose to take into account for the anxiety (another reason why I’m probably feeling relatively calm) so maybe his sniffing thing is more of an indicator that my steroids aren’t right ie today I might be slightly over replacing them because I took more. Which is useful if that’s what he’s doing because then I can gauge my levels right since there’s no way I can check them myself! I wonder if my consultant would listen if I said “well Hamish hasn’t been rummaging in his toy box so my steroid dose must be right!”

Anyway, here’s some things that have made me feel better about surgery when I start to get stressed:

– my (amazing but a bit grumpy in a good way) GP wrote me a really good letter summing up the fact that I’m worried people won’t give me steroids and how I’m a bit of an odd case. So they should be consulting someone, not just ignoring me.

– I get to go first on the list so I should hopefully be finished by lunchtime and on the ward with lots of time before shift changes

– I have 2 consultants with me. I’m getting the best treatment available to me

– I’m probably going to be the most interesting case they have that day. Not for the surgery, that’s boring and straight forward. But how AI impacts on things. I’m banking on that being a reason for people to pay more attention to my case. Yeah it’s more risky, but it makes people pay attention

– if I do have any close encounters, these ones are actually “planned” with 2 consultants in the room and other people who might be interested in my case. I’m not just trying not to die by myself and having to manage everything. It’s a bit of a luxury really!

– I’ve had an operation before but it was while I was living in France. My French is good, but I didn’t (and still don’t) know the anatomy of my knee in English, never mind French! (well, French I’m good at talking about knees now. I still don’t know the words in English!)

– in the same vein, I’m not having to leave the country in 2 days *touch wood*. Last time I had an operation, I had to travel across France, get through the Paris Metro and London Underground and get up to the Midlands with a suitcase and 2 backpacks while on crutches and not weight bearing because I was moving home from my year abroad. I don’t have to do that this time! Thank you Rebecca and Emily for helping!)

– people keep talking about how much pain I’ll be in after, but it might actually be better for me. I nearly dislocated it twice today by trying to get my coat on. It bloody hurts when that happens. It’s a different type of pain though I guess.

– I’m so glad I’ve got my disabled friendly bathroom.

So I reckon I’m good to go. I’ve got plans in place and all the bits and pieces I need to fight my case if I have to. And now I’ve got my letter from my GP, if it all goes horribly wrong, I know that if need be I can probably ring him and he can get grumpy at people if he needs to be. Fingers crossed it goes well!

I’m anxious about surgery

TW: surgery, death, dying, hospital

I’ve got my operation on my shoulder later this week, to stabilise it from dislocating randomly. The last time it did it, I scratched my head while lying in bed and it popped out. I’ve been avoiding surgery like the plague (my foot also could do with a repair) because my adrenal insufficiency and other health conditions put me at high risk in general, but also in danger of having an adrenal crisis. But dislocating my shoulder also puts me in adrenal crisis so it’s now been decided that the chance of me dying from not having the op is higher than if we take a planned risk and have the surgery. Added to that, both my shoulder and my health are only going to get worse, so I need to have it now while there’s still some chance of recovery afterwards.

But I’m anxious. And I currently can’t sleep so here’s a blog post 😉 I’m not anxious to the point where it feels like all the alarms are going off on my dashboard, but I’m not asleep so I know I’m anxious.

I have a big issue around sleep or being unconscious. Before I got diagnosed, I’d feel so awful that my body would wake me up every 40 minutes with adrenaline because that was what it needed to do to keep me alive. Then I started treatment and my subconscious kept waking me up to check I was still alive out of habit. Even as a child, decades before I was diagnosed with anything, I used to wake up feeling sick and like I’d been electrocuted so my brain decided that if I just didn’t go to sleep, I wouldn’t wake up feeling like that. Which is true, but it also added to the problem- I was waking up feeling ill because I was so sleep deprived.

I have an even bigger issue about being unconscious. I had an arthroscopy on my knee about 15 years ago and I said at the time I didn’t want to have a general anaesthetic because I didn’t like the idea of being unconscious. Which leads me to my next problem- whenever I have had anaesthetic it hasn’t really worked so I’ve still felt pain. In my knee op, they came and gave me a general anaesthetic in the end and whenever I’ve had things like teeth taken out or fillings or colonoscopies with sedation, I’ve always felt pain. I just assumed everyone did until i changed dentist and he said he could give me more if it didn’t work. What a difference that made!

So already, before you add in the scariness of having adrenal Insufficiency, I would already have more anxiety than the average person because of my experiences under anaesthesia in the past.

Adrenal insufficiency makes it a million times worse. Cutting into your body and screwing things to bones is a massive stress on the body and a normal human would be making a ton of cortisol. If a normal person didn’t have anaesthetic, their bodies wouldn’t necessarily be able to mount a big enough cortisol response, they’d go into shock/have an adrenal crisis and then (maybe) die. Even with anaesthetic, my body can’t make a suitable amount of cortisol so it has to be replaced by the anaesthetist in the form of steroids. There are surgical guidelines for this but they’re written for the average person with adrenal Insufficiency. So some people will need more and some people need less and it’s down to that one doctor monitoring you while you’re unconscious to get it right, without any concrete way of knowing. It’s a bit like saying to a six foot, broad shouldered rugby player that they’re going to have the same appetite as a 8 year old. They *might* eat the same if you’ve got a particularly famished 8 year old but chances are they won’t. The rugby player will probably survive though, so long as he hasn’t had to play back to back matches for days on end, then he might faint from low blood sugar. But it’s fine, the coach can give him a banana which fixes the blood sugar but turns out he was allergic to bananas so then he went into anaphylaxis, had a heart attack and died. If the coach had known about his banana allergy and if the player had known he needed to ration his food ahead of the matches then it probably would have been fine. But all those things came together in a chain reaction and killed him.

That escalated quickly! But that’s the point I’m making about why I’m anxious. Everyone on my surgical team has been really, really good so far but they only know what I’ve told them and how do I know I’ve told them the right things? They don’t live with it every day and I’m not going to be conscious to be able to say “hey I think I need more steroids”. I haven’t met the anaesthetist but I’m supposed to trust him to make all the right judgement calls even though the first time he’ll talk to me will probably be about 10 minutes before. And if I’m stressed when I’m conscious then my subconscious is going to be even more stressed out when I’m under anaesthetic. I can’t do anything about my subconscious. And helpfully, a stressed out subconscious is likely to bring on an adrenal crisis too!

Plus there’s a whole other set of consequences and cortisol requirements to do with giving adrenaline and drugs to maintain blood pressure. It’s very sciencey and makes my brain hurt but I’m sure you’ve got the gist by now- anything I get given will have a reactive response to how much cortisol I’ll need.

Just because I survive the operation doesn’t mean we’re out of the woods. Adrenal Insufficiency has this knack of making you think you’re fine and then hitting you hard. Normally in the middle of the night, when your cortisol level is at its lowest. And I already said I wake up feeling terrible on a good day, never mind after surgery. Everything always hits me really hard on the 3rd day after any stresses or changes to my meds. But there’s also a set of stages to negotiate even before I get to the dreaded 3rd day- the nerve block wearing off in the evening, going on to IM or IVs every 6 hours rather than a continuous infusion, getting back onto oral steroids, getting back onto oral pain meds. Every single one of those steps will have the initial “shock” of it making me feel awful, but then also a 3rd day response too. If you’re good at maths, you can tell that some of the 3rd days will also be the start of a new step, so it’s like a double stress.

The final layer of my stress/anxiety about this op is that people regularly refuse to give me steroids because they don’t understand Ai. They hardly ever get the time sensitive nature of giving them either- “just” 5 or 10 minutes late can mean life and death depending on what else is going on with my body, never mind hours like they often leave it. I usually threaten to do my own injection as a way to get people to listen but I can’t physically do my injection with one arm. Because I’m constantly clock watching, making sure people bring me my drugs, I don’t want to fall asleep in case I miss my alarm or the nurse decides I’m asleep so will come back later. Not sleeping slows down my recovery and means I’m more likely to have an adrenal crisis… and the cycle begins again. It’s not as bad if I’m on oral meds because I can just take my own from my hidden stashes, but I can’t do the IV ones with only one arm.

I’m super organised and have done everything practical in my power to try to alleviate my anxiety around it. If something goes wrong (*touch wood it won’t), it’s not because I’ve not covered all my bases. I used to get really obsessive about things, checking things a lot, kind of bargaining by saying “if I do X properly then Y will be fine” but I did a lot of work with a counsellor on it and it’s fractionally better. I’ve not quite got to that stage yet, but I’ve already set myself deadlines like “I need to finish this sewing blanket before Thursday because…” which I know I’ll obsess about if I don’t manage to finish it.

I’ve got a killer week this week with a crazy amount of appointments so I’m just taking it one step at a time right now. I think it worse knowing when I might be ill in advance, even if it does give me the chance to make plans!

I’ve never been so excited to have a cold!

I’ve never been so excited to wake up with a cold! I haven’t been sick with any common illnesses since I started alert training with my assistance dog but this week I got a cold. Lots of people get that “coming down with a cold” feeling, but because I generally feel like that every day anyway, I tend to ignore it or just assume it’s another part of my condition. Hamish didn’t though because he’s a smart dog!

When people with adrenal insufficiency are sick, they have to change their doses of steroids to mimic what a healthy body would do when it produces a lot of cortisol to fight the infection. You can’t just double up your doses whenever you feel a bit sniffly though, because you don’t want to be on too many steroids, but, more importantly, you don’t want to give yourself too few steroids because that could make you have an adrenal crisis which is life threatening. There’s no way to check though so you have to guess and hope for the best! And the guessing is even more fun when you don’t feel like you’ve got any symptoms, so if often seems like it creeps up on you and hits you hard. There are Sick Day Rules we’re supposed to follow, but it’s a bit like giving everyone the same diet plan to eat every day- yes it’ll in theory give you everything you need, but it’ll not suit everyone all of the time because humans are all different.

Anyway, Hamish was a super dog this week. It started at dog training class where he did his stop/refuse to move/stare thing and then gave me his paw when we sat down. He usually alerts me at some point in dog class because it’s hard work, but he also got really agitated and moved himself to sit on my feet so I physically couldn’t move. Then he started showing signs of being aroused/anxious so I took him out into the corridor and he ran around chasing his tail for a good minute, gave himself a big shake and then managed to calm himself down. This was all a bit odd, and reminded me of his early alerts where he just used to burrow the floor, so I decided to listen to him and took extra steroids.

The next day I went out for a coffee with a friend and he was unsettled and had a random bark in the middle before settling down again. I assumed it was because she was a stranger to him, but with hindsight, he did it right around when my next steroids were due. So I’m thinking that was a mini alert.

That night, I woke up to him whining next to my bed a few times and pacing around and looking at me a lot. This happened a few times so I checked it wasn’t something he needed like food and water and decided that he must be doing it for me somehow and decided to take some more steroids at around 3am.

Then I woke up the next morning with a cold. I was so excited! I was proud that he’d managed to alert me, even if it was more because he had unusual behaviour than a well-thought out alert, but also because he’d alerted, it meant that I’d had extra steroids when I needed it so that I didn’t feel pre-adrenal crisis-y when I woke up. It was such a massive difference! Normal bodies fight illness overnight, so if we know we’re sick, we often add in doses at midnight and 4am. But that only works if you know you’re sick, which I didn’t. But Hamish did, he obviously sensed the change in my body and woke me up to tell me. How cool and amazing is that?!

Normally getting your steroids right when you’re ill is a huge guessing game. I can do things like check my blood pressure and temperature and heart rate to make educated guesses, but it’s still a guess. Having Hamish acting strangely has actually been a really good indicator for me if my dose is right or not, since he’s trained to alert to changes in my body, not just low cortisol itself. The weirder he’s acting, the more I need to make a change by either increasing my dose, changing the time or by slowing down a taper. He’s obviously not fool proof but then nothing about this condition is, and, unlike me having to go and check all my obs myself, which can get a bit obsessive if you’re not careful, he can actually do it in real time.

How amazing is my dog?! While I’m ill, we obviously haven’t been doing any training but I’m also giving him lots of time away from me so he can turn his nose and brain off. Like if I go for my after lunch nap, I don’t take him with me to my room, and he’s been getting goo, run around and sniffy walks with my dad every day. He’s being looked after just as well as he’s looking after me (and he would always come first).

The mental load of being sick is so much less than normal. Like I said, you can get caught into a cycle of checking your numbers every 10 minutes because you’re desperately trying to catch the tipping point of what you need to do medically and when (double dose, injection, ambulance, GP, hospital). I hate sleeping when I’m ill because there’s the very real possibility of not waking up. Those things are still there, but it feels like some of the pressure is taken off me because someone is deciding with me, even if he doesn’t realise it!

I’m still not fully over my cold yet, but *touch wood* Hamish has helped keep me out of hospital or getting an infection this time. Clever dog!

I decided to have shoulder surgery

TW: surgery, hospital, death

At the start of last week I’d decided I wasn’t going to have stabilisation surgery, but by the end of the week I’d changed my mind. I’m a high risk patient for surgery- I’ve got adrenal insufficiency, hypertension, high cholesterol, tachycardia, asthma, I’m obese and I’ve not had good reactions to anaesthetic in the past. My steroids mean I’m more likely to get a post-op infection and that with my osteoporosis and other hormone deficiencies means I’m slower to heal. At the moment *touch wood*, I’ve got no new fractures or injuries in any of my limbs, just the old ones to deal with, so I didn’t really want to be putting myself through an operation which had no guarantee of working, which I might die from anyway. I was told a couple of years ago it wasn’t a good idea to have surgery on my foot, even though it bloody hurts every day, because the success rate didn’t outweigh the risk for me. And I was “healthier” then!

But then this is my shoulder which spontaneously dislocates easily, eg by scratching my head. When it does that, it puts me in adrenal crisis pretty much instantly and no matter how good I am at my injection, you can’t do it one handed. So there’s this constant “try not to die today” cloud hanging over me. Plus I can use a wheelchair and crutches to help my foot. But you need working arms to do that. Experience tells me it’s easier to lose function in your lower limbs than your upper ones. And I’d potentially gain a lot by having it, by being able to do things like getting dressed, using a knife and fork, typing etc by myself again. Which is why I was on the fence about having a planned risk surgery compared with just leaving it and trying not to die.

I had a pre op assessment with the anaesthetist consultant and a follow up with the orthopaedic consultant last week so I decided I’d take the approach I’ve done with absolutely all of my health decisions so far:

Go by gut instinct.

It’s kept me alive so far, even when many people have told me I’ve been wrong. But before the appointments, my gut was telling me not to have it.

Then I had my pre op appointment with a consultant who’s currently my new favourite. He started off by saying “I don’t see any reason why you shouldn’t have it, what exactly are they making a fuss about? Yeah you have these health complications but you managed to walk yourself in here without too much difficulty so…”

Brief side note- if you know me, one of my pet hates is when doctors try to minimise my symptoms or base their prognosis on something like me walking up the corridor. Because most of the time they don’t actually understand how serious all my health things are and I always “look fine”. But in the same way doctors have their ways of assessing patients in the first 2 minutes of an appointment, I do it with doctors too. So the things I liked about him were the fact that he ran off down the corridor to find a chair for my mum too, which, as a consultant, they wouldn’t normally do. They’d usually ask a nurse. On his desk I could see his own handwritten notes about me and on his 2 screens, he had letters up from my consultants, but not the most recent ones, so he’d had to go back through my records. He’d obviously done his homework. He introduced himself, explained why I needed to see a consultant and not just the nurse and asked what I wanted to be called (my first name or Ms…). All while looking at me and not faffing with his computer. Simple things, but they don’t happen very often in the NHS!

He already had many big ticks from me and then he said his comment and my reply was something along the lines of “you’re the first person in about a year who hasn’t made out I’m going to keel over in the next minute or so!”

Adrenal Insufficiency has a set of surgical guidelines different from how normal surgeries operate. We have to have (as a minimum) IV steroids at the point of anaesthesia and then be monitored and on a steroid infusion over 24 hours. We should be first on the list for surgery and we need to be kept in overnight to have that infusion and monitoring, regardless of whether it could be an outpatient procedure for others. These guidelines were updated recently, but he knew them without checking which I was surprised at. He did check other things I said though and he said he wanted to email some of my consultants to ask for extra info. I really like this approach- confident and knowledgable but proactive in getting advice when it’s needed.

This isn’t usually my experience with doctors, especially ones whose sole responsibility is to keep me alive. Which is ultimately what my gut instinct needed to answer- do I trust this man to keep me alive? Normally, people who treat me ask me what I think, don’t know the basics of my illness, don’t appreciate how complicated it is and exactly what could go wrong but equally don’t want to be remotely responsible for me and give me a bunch of vague options with lots of caveats in it to cover their backs. I never actually feel looked after by a doctor, or like I can give overall control to them and let them treat me. In 99% of my interactions with medics, I’ve double and triple checked everything or had to argue to get the basic care needed to keep me alive.

Which is obviously a big problem when you’re unconscious with general anaesthetic! I won’t be able to argue and tell them how my AI isn’t textbook and I’m all a bit backwards. I think the absolute confirming discussion points that I could trust this doctor was when I said pain puts me in crisis and could I have some post op pain meds written up before so there’d be no issues on the ward, and he came up with a peri operative plan with nerve blocks instead to minimise my body mounting a stress response while they’re actually operating. Massive green tick. The other point was when I was trying to explain about how my HRT impacts on my steroid requirement and he said “that doesn’t make sense” (which it doesn’t really, but it kind of does if you know all the ins and outs of my hormones). But rather than making out I was wrong, he just accepted that if that’s what was happening in my body, it was happening. I was the expert patient.

He clearly understood the risk factors (“you’ll need a consultant anaesthetist with you at all times”) but I definitely felt like he was looking after me and in charge. I can’t really explain it, but I felt like I could breathe properly for the first time since this whole “will I need shoulder surgery” saga started 18 months ago.

Next up, was the orthopaedic review. Despite it only having been 24 hours since seeing the anaesthetist, the ortho consultant had talked to the anaesthetist one and he’d been fully filled in. He ran through the 2 options- keyhole to repair tissue but not necessarily as successful, and an open, more sturdy joint stabilisation. He said I could choose but if he “was going to do a surgery on someone like me, he only wants to do it once and fix it completely”. My big concern was if my bones are osteoporotic, then what if they couldn’t screw things together properly. He said “that’s my problem to work out, I can work with what I’ve got when I see it”. Like the other doctor, he knew there might be problems, but he’d also thought about how to approach it. He said he’d be the one operating, and that made me feel better too. He could quite easily just focus on the bone aspect of it and leave all the AI stuff to someone else, but he reiterated my steroid requirements. Again, I felt like I had some breathing space. Two consultants were on my case and they knew it inside out. My gut was feeling really reassured.

The operation is still a bit risky, but if anything happens it won’t be because these two consultants didn’t do everything they could to prevent it or were lacking knowledge. They’ve run their plan past my good endo in the North East, and he’s agreed. With 3 consultants all having written the plan, everyone else has to follow it. Which will be my go-to phrase if I do have to argue with anyone on the ward afterwards.

I might sound paranoid or over dramatic but I’m not joking when I say people have almost killed me in the past because they either haven’t listened; they think they know more about it than they actually do, or because they didn’t fully understand the complexities and were in over their heads. I think it’s a feeling only people with complex health can appreciate- there’s the normal anxiety and apprehension about medical stuff but this is a whole different level of pressure and hyper vigilance. In all of my hundreds of stays as an inpatient in hospital, I’ve only had 2 nurses and 1 doctor where I’ve had that “I feel like I can breathe” feeling and I’ve let them look after me rather than being on red alert. It’ll still be about another year of waiting list, but I’m feeling a lot more positive and settled about it than I was this time last week.

My gut instinct has 100% success rate of keeping me alive so far. So hopefully it’ll keep maintaining that!

To operate or not to operate

That is the question. Although I don’t think I’ll actually be given a choice, I think they’ll likely tell me I’m too high risk.

Brief summary: my left shoulder is now very unstable and dislocates (comes fully out of socket and needs someone medical to put it back in) whenever it feels like it. The last time, I just scratched my head and it popped out. It also sub luxes (where it comes out of socket briefly but pops back in) quite a lot too, also by doing not an awful lot. There’s also some kind of tear in one of the tendons, probably because it’s dislocated so much, and the tendons and tissues around it are like loose laces on a shoe; they do the job, but my shoe/shoulder is going to fall off at some point unless we tighten them up.

If you’ve not dislocated a joint before, it’s put on the same pain level as childbirth. It’s excruciating. One you relocate the joint, the pain pretty much vanishes, or at least it’s a million times better. Now when I dislocate it, I get the immediate relief when it’s put back in but I still get a lot of pain from it every day, I struggle to do things for myself and things like my grip are affected. I’ve been told to not do certain movements by my consultant, but it’s not always as straight forward as just not doing them eg when people hand things to you or my dog does something I have to react to. I was offered an operation a while ago to stabilise it, but I turned it down because having an operation is pretty risky with my medical history and it wasn’t *too* unstable then. But now it’s crunch time (pun intended!)

Aside from the pain, having that unstable a joint is a big problem for my adrenal insufficiency. Because of the pain level and traumatic injury involved in dislocating something, it puts me in massive risk of adrenal crisis, which can kill me fast. One of the times I dislocated it, was the closest I’ve been to dying. Until the joint gets put back in, it’s a huge risk, which can take up to 2 hours depending on how long it takes for the ambulance to come, the drive to hospital and whether people actually realise how dangerous it is when I get to hospital or if they faff around doing x rays first. I have to give myself an emergency injection to buy myself time until the ambulance gets to me, but it’s ridiculously hard (or impossible) doing it with one arm. And at the moment, I have to walk around carrying my injection kit everywhere just in case it does it when I go to the toilet. It’s a ticking time bomb. Plus I’m in pain all day every day with it. So despite the risks of complications in surgery, I’d decided to have it because at least surgery is a planned risk where we can take precautions, whereas random dislocation when my parents aren’t home to inject me could be catastrophic. The decision is which one is least likely to kill me, basically.

But now there’s another spanner in the works. My general high risk factors are: obesity, high blood pressure, high cholesterol. My added ones are: adrenal Insufficiency/adrenal crisis, asthma, sinus tachycardia, taking steroids, brittle bones from osteoporosis, high risk of infection, non alcoholic fatty liver disease, various hormone deficiencies… there’s probably more but I can’t remember. And then there’s what my endocrinologist wants me to do.

One of my recent posts covers it in more detail but the gist is, in order to try to kick start my pituitary function (if it exists) to make other glands in my body work better, I have to taper my steroids a bit to try to provoke it. And I also have to taper some of my other meds including my opioid pain meds because they also impact on hormone production. But I can’t do that if I have surgery because when you have something like surgery, you have to double or triple steroids and will obviously need more pain killers. If I don’t have enough of either and my body really struggles in recovery after surgery, it could make me really unwell and have an adrenal crisis which could kill me. If I don’t have the surgery and wait until I’ve got to as low as I can on steroids and pain killers, I’ll have somewhere to “go” when I have to add things back in again in order to have the surgery- if I halved my steroids in the next few months, I would only be doubling them back up to what they already are now. Whereas if I had the surgery now, I’d be doubling an already higher dose, and I wouldn’t have anywhere to go with those or pain killers, as I’m already on a big-ish dose just to manage day to day pain.

However, if I wait for the surgery and taper my steroids, there’s no guarantee that will work, which will mean more bits of my body will have had time to start breaking or die completely eg thyroid function. Because tapering steroids is going to put a lot of pressure on my system, and I could still end up having an adrenal crisis anyway. And if I wait, my shoulder will (not an if, according to the doctors, it will) keep dislocating which will mean it might get damaged to the point it’s not fixable any more because of my dodgy bones, I’ll be in a lot more pain every day and I still might have an adrenal crisis and die.

Recovery time when you have AI is slow, taking steroids makes it even longer and having brittle bones means it takes even longer still- you can’t stabilise bone well if it’s all crumbly. Plus, what’s the point on operating on something if it’s just going to wear out in a couple of years because my bones are weak.

So we’re back to which is the least likely way to kill me. This is before I even think about my quality of life! If I had the surgery and it was successful and I did all the rehab and the outcome was I can use my left side again and be pain free, that would be great. I’d love to be able to cut up my own dinner! But if the outcome was it failed completely and I ended up worse, or it didn’t make anything better and I put myself through a lot of pain/time for no reason and delay my endo’s other plan, I may as well not have the surgery.

Another factor to consider is that we’re about to get some building work done to convert my bedroom into a living space and bedroom for me, with disabled friendly furniture eg wardrobes I can use, a kettle I can use one handed… it’s being designed with the idea that my left side isn’t strong. If I waited, I could have this space built and ready to go, rather than trying to recover on a building site/having to move out during the building works and have surgery.

I kind of flip between the two but I think I’m leaning towards not having it. It’s not a constant life or death thing, even if it has the potential to be, and I’ve already been living like this for a while. So while it’s mentally exhausting having the constant anxiety that the next time I scratch my head it could be the cause of my death, I managed to survive this far so…. (Small comfort though). If I wait, I might have time to sort my endocrine system out a bit, which (if that works) will put me in a better overall position to survive/recover surgery.

I’ve got a pre op appointment next week where I guess they’re going to discuss all this with me. And any op I have is on the NHS, so despite me having been on a waiting list for a year anyway, I imagine it’ll still be a long time coming yet. I’ll possibly be able to start doing my endo’s plan a bit before I have to have it anyway!

I’m still not sure though, it kind of feels like a lose lose situation.

I saw an endocrinologist

TW: chronic illness, medical gaslighting, death/dying

I wrote a post a couple of days ago about seeing my (not very nice) endocrinologist and what I expected the appointment to be like and what I wanted to achieve from it.

Good news was, my endo, who I don’t get on with, was on holiday so I got to see her much better colleague instead! This endo reminds me a lot of my previous, brilliant endo. He disagrees with you if he thinks you’re wrong, but he has no issue listening to your experience and is willing to negotiate with you to come up with a plan which is the best overall for you as a patient. (You’d be surprised how many doctors put their own ego and the need to be right over their patient’s health).

But it wasn’t a great appointment. After 3 years of extremely high doses of steroids, I’m finally on my target baseline of 10mg pred for my adrenal Insuffiency. In my last post I wrote how I didn’t want anything to change because I was finally feeling like I was getting some kind of (still very restricted) life back. And how I wanted to have better care for my brittle bones from either the endo or metabolic teams. Ie *why* do I keep fracturing things and treat the cause, not just treating the symptoms. The stumbling block is that because previous doctors over the past few years have only been treating the symptoms and not the cause, I’ve hit a point where there isn’t actually a feasible/successful way to treat the symptoms (particularly with my bones) any more, and they’re only going to get worse from now on.

He was blunt and told me that my last bone density (DXA) scan showed that I have pretty bad osteoporosis in my spine, with some helpful red dots showing the really concerning points. It doesn’t take a rocket scientist to work out that fracturing your spine is very bad. And that because I’ve fractured my pelvis and feet just by standing up in the past, a spinal fracture isn’t only very likely but would also make me pretty much bed bound. He said “there are 100 year olds who have better bones than you. The age comparison scale stops at 100. You’re worse than that”.

Brilliant. But it gets better. I’d gone in with the plan that I didn’t want to change my steroids, full stop. And I wanted my other hormones affecting bone health tested and, if necessary, replaced. My endo said he thought that would be pretty useless at this point because it would be throwing more tablets at my symptoms and would kill off my endocrine system entirely.

Which made me pretty grumpy at my idiot doctors. I’ll try to explain as simply as possible but the endocrine system is a complicated thing! I started on steroids long term when my asthma was bad after I had an accident involving an outdoor chemical used in an internal ventilation system. As well as affecting my asthma, it triggered my mast cells into action and gave me a whole bunch of allergies. However, I’d always been poorly as a child in that I spent most of my GCSE years falling asleep whenever I could and having anxiety attacks, as well as having a backwards menstrual cycle. When it became clear that I had adrenal Insuffiency as well as asthma, doctors all assumed it was because of the steroids and ignored anything I said had happened before. Steroids are a wonder drug for a lot of things, because it adds to your body’s natural steroid, cortisol which helps you heal better. But if you take a hormone (cortisol) synthetically (steroids), then your body decides it doesn’t need to make its own any more so the glands become suppressed. If they’re suppressed for a long time, they kind of die off from lack of use (atrophy).

Cortisol is produced in the adrenal gland, but the pituitary gland in the brain is what tells the adrenal glands to make cortisol, using a hormone called ACTH. If you take steroids temporarily, your adrenals will get a bit sluggish or won’t work after a while, but they can be coaxed back into life in some cases if you taper slowly off steroids. But not in every case, like if they’ve already atrophied.

My doctors refused to do the right tests at the time (ACTH), because it costs a lot of money and they all assumed that the steroids had caused my adrenal insufficiency and I’d be able to taper off at some point. They didn’t listen when I told them about my other hormone related problems (lack of periods, random weight gain, blood sugar issues). Until I argued my way to my really good previous endo who repeated the diagnostic test properly which found I make zero ACTH and mounted a very minimal cortisol response when the adrenals were encouraged to do something. He declared that the test didn’t conclusively say if I had primary adrenal insufficiency or secondary, but it didn’t make any difference because I was now going to be on steroids for the rest of my life as he believed my glands had atrophied. I started on HRT after I convinced them to check my female hormones and found I didn’t make half of those either.

Here’s the problem I’ve got to. The pituitary gland controls *everything* endocrine and gland wise, like your thyroid and parathyroid. And I’ve already said that if you take hormones that your body’s lacking, then it stops making its own. We know my adrenals and pituitary are a bit dodgy but we don’t know *which* hormones from my pituitary do or don’t work. Because everyone has been throwing tablets at me without actually finding out why, it’s now impossible to know if my whole pituitary has shut down because I’ve been taking those or if it never worked properly to start with. There is absolutely no way my pituitary will start making ACTH again (which would mean my ovaries a parathyroid might work properly again) if I’m taking steroids and a whole bunch of other pills I’m taking for various different symptoms (painkillers and anti depressants). But what is certain is my bones and muscles will get worse if we don’t replace the hormones. Short term, we could throw more tablets at it and end up replacing every single hormone I have. But that only works in the short term, and is really only an option for people who are either dying or there isn’t an alternative, eg there’s no hope of that gland functioning.

The only “good” plan for me is to try to reduce my steroids very slowly to try to kick start my pituitary to make some hormones. *Any* would be good. If it does, then we can conclude that my pituitary was suppressed rather than not working to start off with. If it doesn’t, then my pituitary has always been faulty and taking steroids for my asthma finally killed it off. Personally, I think it’s the latter because I had all the hormone issues as a child and because that’s what my good endo said he thought had happened. But because I had some d***head doctors who didn’t listen/thought I was lying/were too arrogant/didn’t know enough/didn’t want want to spend money and didn’t didn’t do the right tests, we have no way of knowing.

So I have 2 options: spend the next few years painfully (and I mean that as both slowly and literal pain) trying to reduce my steroids, pain killers and antidepressants to a lower level to see what happens and to hopefully restore some of my natural function. Or throw pills at it and potentially help my bones but definitely shorten my life as more bits of it fail quickly. I’ve found a few people online who are like me but 10 years older and their bodies are a mess and they spend most of their life in intensive care.

How do you make that decision? This endo said that the next few years are going to be horrible but it should be better after 5 years (maybe). If a doctor says something is going to be horrible, it really is going to be horrible- they don’t just say that. But if I survive 5 years, then I might live longer overall.

But I might not. I could put myself through hell for 5 years to still be told my endocrine system is shot. So it would be the same outcome but I’ll also have suffered for 5 years. Whereas taking hormones now would improve my quality of life temporarily, but would kill me off quicker overall.

Not only that, but reducing steroids when you have adrenal insufficiency puts you at risk of dying quite easily. And I could still fracture my spine and end up bed bound anyway.

But bits of my body are worse than someone who’s 100 years old. People who die of old age die because their body’s had enough. There are only so many hormones you can replace before it decides it’s had enough.

So I’m going with trying to taper down my steroids to as low as I can without dying and get rid of some of my other meds completely. Which is going to be absolutely horrendous. I wasn’t put on all those meds on a whim, they all treat symptoms that I couldn’t cope with before. I have to voluntarily put myself through it to hopefully see some improvement. All because doctors didn’t do their jobs properly and missed out important tests.

I know all of the “reasons” (excuses) why people missed everything until my last endo and this endo started treating me. I’m still angry though because a lot of it was doctor arrogance, assumptions and gaslighting, and that I’m only alive right now because of the near death experiences and hours of research and arguments on my part.

I’d just started feeling like I was getting a degree of normalcy back, in that I wasn’t just concentrating on surviving every day any more. Instead, my 5 year plan now looks to have a lot of pain, lots of time asleep or struggling with fatigue, reduced mobility, feeling sick and not able to sleep, stomach/abdo pain and diahrrea, allergic reactions and random mood swings. Who signs up for that voluntarily?

Someone who really doesn’t have a choice. Fun times!

I’m seeing my endo tomorrow

Me and this endo don’t get on. Why we don’t get on isn’t the point of this post and will probably involve a giant rant. But the gist is I don’t like her because she thinks that my day to day symptoms are all in my head and refused to help me until I tapered my steroids, which is what I was struggling with and wanted help with. And she doesn’t like me because I went behind her back to my old endo who backed me up and gave me the help she wouldn’t, and then made her look bad in front of her student.

Anyway… I don’t like going to appointments like this because they involve mind games. On the surface and on paper, she looks like she cares- everything she says is factually true. It’s like watching 1950s housewives on tv shows socialising- everything seems very pleasant but is actually a very pointed comment or backhanded somehow. For example “I think it’s great you’ve been to the food bank. Do many people volunteer?” when they know fine well that the person has been using the food bank and not volunteering, and they want to embarrass them either because they admit to using it, or hold it against them later on because they lied about it. Nice but not nice.

I really, really hope that I’m proved wrong, because then I’ll get what I actually need. But this is how I anticipate it going:

⁃ An “I told you so” because I’m on my baseline of steroids and my Adrenal Insufficiency has got more stable, I’ve managed to lose some weight and I’ve had fewer hospital admissions this period. All which are very good things but she’ll try to take credit for it or say “this is why I wanted you to taper”. I never said I didn’t agree with her about tapering my steroids. I was saying I was finding it hard and wanted help and she said it was all in my head and I just had to “ride it out” (her exact words). I didn’t want to “just ride it out” because I thought it was more complicated than that so I went away and since got diagnosed with a heart condition, a viral rash and some food allergies and intolerances. Treatments for those helped me reduce my steroids because they weren’t being eaten up by the other illnesses. Nothing to do with “riding it out”.

⁃ Some kind of comment about me having too many HCPs involved in my care and how she wants to streamline it. I don’t want lots of doctors, but if she’s not going to help me, then someone has to. She’ll probably argue about the metabolic clinic referral I want, even though my test results say I need one.

⁃ I imagine she’ll bring up my anxiety and how I shouldn’t go to hospital and ask for steroids because I’m not in crisis. I have no issue with this principle since I do have anxiety. But I do also have AI, and the reason I ask for steroids is because I need them- she’s never seen me in a crisis and hasn’t taken the time to find out, so what clinical judgment is she basing this on? She’s made it clear I’m just to “ride it out” ie she thinks it’s all a mental problem.

⁃ She will possibly say that I should be on 7.5mg pred per day and not 10mg so we should try to reduce it further, which is the normal dose. And she probably won’t like the fact I have some in the evening rather than just one dose in the morning.

What I want from the appointment:

– I really want a metabolic clinic referral or for her to look into my other hormone deficiencies properly to see why I keep fracturing things. I’m in need of an operation on my shoulder but orthoepdics want a metabolic input because they’re not sure if I’ll heal properly if I’ve got a hormone problem. My endo keeps blaming it on my high steroids, and that definitely doesn’t help. But they do a baseline bone density test when you first start steroids and then another one every couple of years. If it was just because of being on high steroids, there should be a decline between my first test and all the others. But there isn’t- my results are pretty much the same as what they were when they did the initial test *before* I was put on steroids, which suggest I had the problem beforehand but it was just highlighted once they did the routine test because I’m on steroids.

⁃ I don’t want to be taking alendronic acid for my bones if the underlying cause is a hormone deficiency and can be treated. My parathyroid has come back as high in the past. I know I already have estrogen deficiency. Both have an impact on osteoporosis and fractures. The alendronic acid just treats the symptoms but not the cause. And it’s *terrible* for other things like your teeth and heart. It’s only really been given to old people until recently, so no one actually knows how bad it is for your heart because all the old people died within a maximum of 20 years of taking it. But if in that time they’ve identified significant problems with heart health because of it, what’s it going to do to me if I’m taking it for more than that? Not to mention the gut issues it causes, and I already have heart and gut problems. I only got put on it because I was fracturing a new bone every week and my GP needed to try something until I got seen by a specialist. But I’ve been arguing with people to take me seriously about it for 3 years now because everyone else says it’s not their problem. It’s either an endocrinology or metabolic clinic thing, and as the referrer for the bone density test, she needs to either refer me to the metabolic clinic or deal with the outcome of the test herself. Which says “referral to metabolic clinic recommended”. She refused last time and said I had too many HCPs involved as it was but agreed to do another bone density test.

⁃ I don’t want to change anything to do with my adrenal insufficiency. I want to stay on 10mg pred, split into Am/pm doses. And being able to use Hydrocortisone a couple of times per week if needed based on my low cortisol symptoms. I don’t want any of that to change. That’s what my old endo wanted me to achieve, and I have, and while things are far from perfect, they’re a hell of a lot better than they were this time last year.

⁃ I don’t want to have a discussion about my mental health unless it’s to do with how to help ease my anxiety when I’m in a&e (which it won’t be because she thinks I waste people’s time). I have anxiety because people like her have gaslighted me so much in the past about how I’m “not that sick” and then it’s later turned out that I was actually very sick and nearly died. Before she’d even met me, she’d decided that all my problems were because I was on too many steroids and that I had no reason whatsoever to need that many. Even though she’d decided this without having spoken to me and at the time I had 6 fractures, an undiagnosed heart condition, multiple untreated allergies, gastro issues every day and was going through a divorce. *That’s* why I was on the steroids that I was on. So no. I’m not entering into a discussion with someone about my mental health who says I should just be able to “ride all those things out”. (Just a reminder for those who are maybe still on her side- my old endo who knows me and has seen me when I’ve taken myself to hospital and asked for extra steroids backs me up and says I know what I’m doing.)

I’ve been to lots of appointments and know that the most dangerous doctors are the really, really nice ones. Because they say everything “because they want to support me and look after my general well-being” but what they’re really doing is making sure that you look unreasonable if you want to challenge them with anything. I know the tactic because I used to do it with difficult parents at school as a teacher- you kill them with kindness. It’s very hard to be forceful or argue back with someone who’s being really, really nice to you. Difference being, is when I was employing the tactic, it was because I was dealing with poor behaviour which needed changing, not a patient who wanted a say in their treatment options. I like my old endo because if he thought I was talking rubbish, he’d tell me so, and actually use those words! But if I disagreed with him and made a valid point, he’d listen to it, consider it and, if need be, read up about it or ask a colleague. If I was still wrong, then that’s fine. He was at least willing to explore different theories with me because he trusted my judgement that when I said I felt like something else was going on, there probably was, and that I wasn’t just lying about it.

So I don’t really know what to expect about tomorrow. I’m gearing up for a fight because if I don’t, then I’ll get overwhelmed and not be able to fight my corner. I’m not going to go in all guns blazing and on the defensive straight away though, that would be unfair (and stupid). She might surprise me and I really hope she does. She might have a plan for me or be quite happy to refer me on to the metabolic clinic. She might say “keep doing what you’re doing” and leave it at that, which would make the 3 hour round trip and my dad’s day off work a waste of time, but at least it’s showing she’s listening to me. I might not even have her- the consultants are on strike tomorrow so I might have a reg instead. Which would be perfect! 😉

Medical Response Dog in Action

I’ve been training Hamish to be my assistance dog for just under a year now, and his first official task he learnt was to be able to find help from my parents. We’re currently working on him being able to get things for me, like my emergency injection kit and my phone. Recently we got the chance to test him out doing it in a real life situation and he did really well!

A few weeks ago, I fell over and badly hurt my knee. Ironically, I fell over Hamish because he was doing his good dog sit in the hallway and decided to have a scratch at the exact moment I was trying to get past him. Normally when he’s in his good dog sit (because he wants something or is showing off), he doesn’t move. He’s like a statue. But it was the start of hayfever season and he’s got very itchy all of a sudden. So he rolled over to scratch, I accidentally stood on his paw, he whimpered and I moved fast to get off him and fell over straight onto my knee.

Risking hurting my knee was preferable to putting my arms out and definitely dislocating my very unstable shoulder. But I went down hard. It bloody hurt and my first thought was “s*** I might’ve broken my knee cap”. Injuring myself with adrenal insufficiency is a huge problem. Your body goes into fight or flight mode and makes a lot of adrenaline and cortisol to help the body deal with it. Mine makes the adrenaline but it doesn’t make the cortisol which is what keeps you functioning/alive. If I don’t give myself extra cortisol (steroids or injection) when I hurt myself, I risk going into an adrenal crisis. The worse the injury, the faster the crisis comes. You have to act quickly.

Considering I’d just trodden on Hamish and he was obviously a bit shocked (but not hurt), he was amazing. He ran backwards and forwards between me and my dad until my dad came to help. Then he laid down calmly next to me and waited, which is exactly what we’ve been training to do. I’ve taught him to “find Bert” (my dad’s codename) when we’ve been training to find help, but he instinctively seemed to do it anyway. Once I’d recovered a bit/the initial pain subsided a bit, I told Hamish to “find pills” and off he trotted to get my injection kit for me. For now, because it’s still quite a new task and we’re working on it, I’ve been keeping it in the same place in the house to make it easier for him. But it means I don’t have to walk around with it physically on my person all the time, so it’s amazing he can get it for me.

Ok, so he took it for a little trip outside and stood on the front door step with it in his mouth, having a look. But when I said “Hamish, bring it here” he came back in with it and put it straight into my hand.

It was actually a good opportunity for us to put our training into practice so far. I was injured enough that I needed to take a big dose of extra oral steroids (also in my pills bag), but not so bad that I was worried about imminent death and needed my injection kit urgently. I went to hospital to get it x rayed to make sure it wasn’t broken, which it wasn’t, and had increased steroids and Oramorph for the next week or so. It made me realise that while it’s great he can respond to my verbal commands to find help and get my meds, it’s reassuring that he went to find dad all by himself and that I should (eventually) train him to bring me my injection kit automatically just in case I can’t say the command. I was also really proud of him for lying down calmly without needing to be prompted rather than having a complete meltdown because I accidentally trod on him.

It also made me consciously acknowledge that all our training is paying off. That even though it might feel like he’s “not that useful” at the moment as an assistance dog, that his tasking is definitely improving and he is looking after me. One of the hardest things about this illness is the mental load of it. It’s never a case of “take your meds and you’ll be fine” you literally need to be on top of everything all the time for when life inevitably throws you some curve balls. For example, who knows when you’ll risk life and limb tripping over your assistance dog who’s trained to save your life? 😉

Nothing was broken but I ended up with a spectacular bruise and crutches for a while. We’d just started working on him taking off my socks and shoes for me before this happened and it made me realise it would’ve been handy for him to have nailed this skill before I got injured!

The only way I can describe it is my life constantly feels like I’m holding an egg all the time and I’m trying not to break it. Hamish starting to be able to task for me means it’s now a part boiled egg; still fragile and needs to be carefully looked after, but not going to break as easily. Thankfully, my dad was home to help but even if he’d been out, I know Hamish would’ve been able to help me as much as he could (dogs can’t give injections unfortunately!)

Hamish’s absolute favourite task is when he gets to find my dad for me. He’s very waggy with his tail and runs up to him smiling! Hamish quite enjoyed me getting injured really, since he got a lot of fuss and I bought him a llama toy for being such a good dog.