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 😉

Rare disease and how it’s not always “fine”

“Everything is normal…”

“You should be fine…”

“You should be reassured that…”

They’re all supposed to be comforting phrases coming from your doctor, but I rarely feel better when I hear them. Because when you have a rare illness, “fine” becomes a pretty meaningless word and has many interpretations. My rare disease is Adrenal Insufficiency, which is where your adrenal glands don’t make enough of the hormone cortisol, which is needed every day to keep you alive.

You’re not fine because the science doesn’t work in your case

I’ve had it so many times where my bloodwork and obs are “fine” but I know I’m really not. It’s led to a few close calls where it’s been more fluke that I survived than anything. Blood tests are great for giving doctors clues, but only if they run the right test. They can’t possibly test your blood for absolutely everything so they have to have an educated guess as to what to test. If they don’t run the test you need to tell them you’re seriously ill, they’re not going to know any differently, so they’ll tell you you’re fine. Blood test results are based on healthy individuals, so a lot of the time the reference ranges don’t apply. Eg my gynaecology bloods kept getting analysed as though I was a healthy woman still having periods so I was “fine”. After a lot of arguing, I persuaded the consultant to check them as though I was menopausal (even though I wasn’t, but there isn’t a section for “nowhere near menopause but doesn’t have periods for an unknown reason”) and suddenly I wasn’t fine and had a big hormone deficiency.

Likewise with obs. I know if my BP gets to 140+ for the top number and 90+ for the bottom number, that I’m heading for an adrenal crisis. This always confuses doctors because in adrenal Insufficiency, most people’s blood pressure goes down in crisis, not up, so even if they have heard of it, they probably haven’t come across that version of it before. And those BP results aren’t really that hypertensive by themselves, so I always get told I’m “fine” until I crash quite spectacularly. Unless I get a good doctor who listens to me.

You’re not fine because your doctor won’t listen

If you’ve got a good doctor, they’ll listen to you talk about your condition and either go away and look it up properly or ask their consultant, or they’ll ask you a lot more questions and work *with* you. But unfortunately, a lot of people with rare illnesses get fobbed off by doctors because either their ego gets in the way and they don’t like admitting the fact they don’t know everything, or because they arrogantly think that their knowledge and expertise is greater than yours. A lot of the time, they try to blame it on a mental health problem. Don’t get me wrong, I do have health anxiety, I’ll freely admit it. But it’s not health anxiety in the sense that I go home and fret that the headache I’ve got is a brain tumour. My health anxiety is solely around the fact that I’ve almost died several times because my doctors haven’t listened to me and/or refused to give me the care I need and have told me I’m “fine” when I’m not. I don’t always feel safer when I get to the hospital and am surrounded by doctors. It’s even more scary having to argue with all of these people who are supposed to help you than it is to have the life threatening, time sensitive illness itself.

You’re not fine because it’s a bit of a mystery

Once you’ve got diagnosed and have a doctor on your side, you can still be far from fine purely because no one knows the ins and outs of the illness. Remember how helpless everyone felt at the start of Covid because no none could predict what it was going to do, all of the treatments were trial and error, we basically had to wait until a few hundred thousand people had had it before managing to work out treatments by process of elimination and guesswork… that’s what it’s like having a rare illness. It’s mostly just guessing. I’m regularly told my symptoms aren’t part of my AI or are “fine and nothing to worry about”. Which might be the case, but it could also mean the reason why your doctor thinks it’s “fine” is because not enough other people have reported the same thing for it to become well known enough. In other words, unless the doctors get together and compare notes, we could all be showing the same issues but no one would know about it. There’s not enough research into rare conditions, and the studies that do exist tend to have small amounts of test subjects and miss out entire demographics of people.

You’re not fine because we can’t predict the future

Treatment for rare diseases are limited and scientists don’t actually know what a lot of the long term implications are from taking treatments for long periods of time. For example, I have to take alendronic acid because my lack of estrogen production means I’ve got osteoporosis. But because it’s an illness mostly diagnosed in geriatrics, no one actually knows the long term implications of taking this drug long term because, to be blunt, the people who take it tend to die because of their age in the 10 years after they start it. There’s no data yet for people my age taking it for 30 or 40 years.

You’re not fine because you can’t communicate what you’re feeling

Life threatening issues aside, you can still have many symptoms that make your everyday life miserable which doctors will tell you are fine or normal because they don’t know what it feels like. Everyone can empathise with dizzy, fatigue or shaky as words to describe unpleasant feelings. But when I have those it isn’t the same as when I was dizzy, fatigued and shaky before I had AI. And I can’t find the words to explain it. The shakiness, in particular, is something that seems pretty specific to AI- we describe it as vibrating on the inside or like a shimmering feeling. It’s horrible but it’s hard to convey how horrible when the other person hasn’t experienced it. But if you say it to someone else with AI, they know exactly what you mean!

You’re not fine because every rare illness patient is unique

When studies are done and textbooks are written about rare conditions, they’re based on what’s normal for the majority. But what you find with rare disease patients is that they tend to have other conditions which impact on it, which means the norm goes out the window.

You’re not fine because you don’t feel like you can trust your doctors

When you’ve nearly died despite someone telling you you were fine the hour before, it makes it really hard to trust people. Even if you have a really good doctor, they can still get it wrong. The only thing that has been consistently right for me is my gut feeling as to what’s fine and what’s not fine.

You’re not fine because you don’t actually know what fine feels like anymore

The nature of my chronic illnesses means that it feels different every day. So what’s the benchmark of feeling fine? Is it everyone else’s version of “fine”? Because feeling terrible every day doesn’t seem like I’m fine to me. Or am I fine in relation to what I normally feel like? And is that actually fine, or is it something else lurking in the background that just hasn’t been diagnosed yet and turns out to be dangerous too?

One thing’s for sure is I never feel reassured when someone says “you should feel reassured that…” If anything, that’s a massive red flag right there for that member of staff, unless they’ve proved to me that they have a decent knowledge of my condition. “You should be fine” is another phrase that sets alarm bells ringing because that can be said in a lot of scenarios, ranging from “I need the bed back and you look ok so I’m discharging you because it’ll probably be fine (hopefully)” to “I have no idea what’s going on but I can’t actually do anything about it even though I really want to” or even “I don’t believe a word you’re saying and I want to get rid of you”.

There are so many things about having a rare illness that aren’t fine. But there’s also some pretty cool stuff too. You get to know yourself, your body and your instincts really well. It makes you really resilient. It forces you to educate yourself in your condition as much as possible. You get to be at the forefront of new research which can go on and help other people and conditions. When you do meet people with the same condition either in person or online, it’s like you’ve found a long lost family member. Your illness is nearly always used as a storyline on medical dramas like Grey’s Anatomy. When just getting through the day is an achievement in itself, you massively appreciate the little things in life which pass others by. Medics find you fascinating which means lots of chances to teach HCPs about your rare illness, meaning you form different relationships with staff than other patients do (which sometimes means extra pudding when on a ward!)

I’ve learnt a lot about myself because of having a rare disease and it’s definitely shaped my life today. I won’t be able to find some kind of miracle cure, but I’ll hopefully be able help make things better for future generations with adrenal insufficiency. It’s hard work every day, but every day I learn something new and make a little bit of progress in my own little way. And I’m fine with that.

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!

A good hospital appointment and the northern lights

Today was a good day! I had my follow up for my shoulder surgery with my orthopaedic consultant where they did an x Ray and removed the last remaining clips in my wound and said that so far everything is healing well and that the operation was successful. This is amazing! I still have to do a few months of physio and have to look after the joint while it heals but as long as I “don’t do something like play basketball” (exact words lol), it should recover fine. We talked briefly about how I needed to go to a&e at the weekend because my temperature went up and the wound was bleeding a bit but he was quite happy with what it looked like now and the fact I’ve finished the antibiotics they gave me. The only other thing he commented on was the fact that I’m still on a stress dose (double dose) of my steroids for my adrenal insufficiency because I haven’t felt well enough to taper yet.

I like Mr Kumar, I think he’s great. So rationally (and my dad was there and agrees) I know he wasn’t commenting on it in a “you’ve not tried hard enough” way or “you’re being an idiot”, he was actually concerned as to why I felt like that. But the many, many years of doctors blaming me for not being able to taper my steroids is ingrained in me and I still feel a bit like “I need to taper to baseline NOW!” Rationally, you don’t taper steroids if:

⁃ you have a temperature. That’s sick day rules straight away

⁃ You’re in a lot of pain which keeps you awake at night

⁃ You’re having gastro issues

⁃ Your alert dog is giving you alerts every day

⁃ You keep nodding off while you’re in the middle of doing things

⁃ Your blood sugars are all over the place and you don’t know why

But there’s still that part of my brain that feels like I’m letting Mr Kumar down (is the best way I can describe it!)

The biggest thing for me is that the joint is now stable. It means that I can retrain my brain to not be on quite as high alert as “if I scratch my head will it kill me?” kind of mentality. Because the last time I dislocated my shoulder, I scratched my head, had to ring 999 with my nose from my phone, had an adrenal crisis and had to get ambulanced to hospital sharpish. I didn’t fully realise how much of my brain was taken up with that kind of humming in the background until my doctor said “oh you don’t need the sling now, it’s been 3 weeks. It’s strong”. I felt a big weight lift somewhere. Even if I don’t get full range of motion back (some people don’t), I’ll still see it as a success just for it being stable.

It still hurts and gets tired fast and I still can’t straighten my elbow or move it very easily. It doesn’t yet feel like my arm since it’s been radically altered with pins. So it’s not like he said “you don’t need your sling” and I was able to immediately do cartwheels or something(!) I’m still going to be sensible and do my rehab properly and at my speed so I can do it well and do it once. But I came away from my appointment feeling very happy and positive, which isn’t a feeling I have when I leave appointments normally- I usually end up getting diagnosed with something new which has the potential to kill me! It was nice to come away (almost) cured of a problem for a change!

One thing I do like about driving home from the hospital is that when it’s clear, you get a really good view of Skiddaw and the surrounding fells (a mountain in the Lake District). Today it was particularly pretty because it was sunset and there’s a hard frost. Later on, my dad told my mum and me that you could see the northern lights from the back door step. It wasn’t the full display, although some places nearby could see them. And you kind of had to squint! But nevertheless, they were still there. It finished off an already pretty good day well for me.

Today I got to leave the hospital with a positive prognosis, like lots of people do but is unusual for me. I got to see a pretty view on the way home which is pretty normal for lots of people who live around here but unusual if you live in a city. And I got to witness the northern lights which lots of people don’t get to see in their lifetime. So as far as days and life experiences go, today was a pretty good day to have my life.

Adrenal Insufficiency & Shoulder Surgery

TW: surgery, hospital, graphic detail, medical procedure, hospital, adrenal crisis

I had surgery on my shoulder a couple of weeks ago to stabilise the joint to (hopefully) stop it from dislocating with simple moments. The proceeded itself is pretty common and routine but because of my adrenal insufficiency, I’m a high risk when it comes to surgery. I’ve since found out that orthopaedic people call it a “major trauma” surgery when referring to it, so it’s probably a good thing I didn’t know that when I was deciding whether or not to have the operation!

I’m pretty good at reading between the lines of doctors talk, working out what they actually mean and whether or not they’re worried. But I had 6 days hanging out on an orthopaedic ward recovering where I got to know the ins and outs a bit more and figured out that my surgical team were more worried about me than they let on, and they had a lot of things going on in the background “just in case”. The fact I didn’t clock any of it until later is bloody impressive in itself!

After I kept dislocating my shoulder, it got to the point where it was a case of I’d either dislocate it randomly and might die from an adrenal crisis or I have an operation and might die from an adrenal crisis. A planned, calculated risk in surgery was better than hoping it didn’t happen by chance when I was at home myself, so I decided to have the op. I’d had a very comprehensive pre-op where we outlined the things to minimise the risk of crisis which included having the consultant surgeon and anaesthetist with me rather than other doctors, putting in place nerve blocks and additional pain relief to dampen any stress response, and starting on a 24 hour steroid infusion and being admitted to the ward for at least this time. Then I got told I’d have at least a year on the waiting list.

About a month later, I was having the op! I’d already worked out that someone somewhere must’ve moved mountains to get me this op date brought forward by a year, but my detective work on the ward after really highlighted this to me. From what I can gather, I was always classed as a trauma surgery rather than an elective one (which is what I actually was) because of the way they ring fenced off everyone for elective surgery except for me. People kept getting confused as to how I knew I was going to have the op on the day I did, because everyone else on my ward had had an accident and then needed emergency surgery. So it was almost like my team were the on call trauma team but already blocked out just for me, probably because of the specific people I needed to have but also because I also had *a lot* more people in with me than other people. A student nurse told me they’d been cancelling elective ops all over the place because they didn’t have beds, traumas kept coming in, they didn’t have the staff… but mine was always going to happen that day, no matter what.

I didn’t actually see my entire team, which I think they did on purpose so as not to stress me out. I thought it was a bit odd that I had 3 anaesthetists (consultant, a core trainee, and a reg) come see me before I went down to theatre, but I also get used as a teaching case a lot so I thought I’d only end up with the consultant in the operating room. He decided that he was going to keep me on bed rest for a minimum of 48 hours and keep me in “recovery for an extended period until he was happy”, which I was fine with because it just seemed like he was being over cautious. But then as we were going through the last details and I was telling him about how my blood pressure goes up in crisis, not down, the consultant got a bit worried and said how he wanted to put a needle into my artery so he could constantly monitor my blood pressure rather than waiting for a reading but “how there’s a risk of maybe losing your hand if we do that” which was a bit freaky to hear! Then the reg came to get me for surgery and said something like “there’s a lot of people in the room, don’t be worried about that” which, combined with a comment of “goodness me, you don’t need 3 of us in there with you, just 1 maybe 2 at a push” to another patient on the ward later in the week kind of confirmed that I was having all the bells and whistles for my surgery. I just didn’t realise until much later.

My anaesthetists explained that they could do things like putting the nerve blocks in when I was asleep, which was easier for everyone but they wanted to keep me awake for it so they could guarantee that the block was working to its maximum capacity by making me do movements which would normally cause me pain. That way, my body would have a lesser stress response to the surgery than if they did the block only partially successfully. This sounded like a really good plan but did involve me having to have a needle poked into my neck at a very odd angle with 2 people holding me down so I didn’t accidentally move and paralyse myself. The most off putting thing was being able to see the ultrasound monitor showing me the needle going in, the core trainee doing it was actually really good so it was pretty painless!

The anaesthetic team were really good at explaining things and keeping me calm. Every time someone passed something over my head, they let me know. If someone was going to talk directly to me, they put their head in my eye line. Simple things but it made a difference. The humoured me when I checked a million times that I’d definitely had my IV steroids and double checked the consultant was staying with me throughout (that’s when I realised I was having all 3 of them). They kept talking to me calmly even though it took a long time to knock me out. I’m not sure what I was expecting but I assumed that you’d count backwards from 10 and be asleep fast, drifting off like they always do on tv. To me it felt like I was fully with it one second and then just asleep the next.

Then the weird bit- I obviously got moved from the anaesthetic room, to the theatre, got intubated, had my surgery, got my gown changed and had a sling fitted and then put on a real hospital bed, moved into recovery and stayed there for a few hours all before waking up. How weird is it that all that happens while you’re completely out of it?! Judging by where my scar is, my boobs and chest were completely on display for all of it! It’s just a weird thought all that happens and you have no recollection of it.

I got taken down to theatre before 9am, and they maybe spent an hour sorting the anaesthetic side out. But it was after 12 when I was moved to recovery because my mum rang before 12 for an update. The surgery was only supposed to take an hour so not sure why it took longer but it did. Then I didn’t come round until about half 1 because I’d not been awake that long before a nurse appeared with my phone alarm going off for 2pm tablet times. I thought I’d woken up quite quickly but I can’t have done. The first thing I said though was “you know I have adrenal Insufficiency, right?!” and once I was happy the nurse knew that, I started asking if I had my steroid infusion set up. She thought I was a bit confused to start off with but still went and got the consultant to come out of his surgery at the earliest point he could to sort it out. He said he was going to start it at 6pm because “the other steroids from surgery should cover me” but I said it needed to be on straight away (because the pump runs at 200mg/24 hours which would work out as 50mg IV bolus every 6 hours, which is an update on the “old” guidelines which were 100mg IV bolus every 6 hours. So less steroid but better coverage). To his credit, he said “I need to update my clinical knowledge”, found my chart and spent about half an hour writing up my detailed steroid plan for the next 3 days sat next to my bedside.

He went away and pretty much as soon as he’d vanished, the core trainee walked past with another patient, literally pushed the bed into the bay, left his colleague talking to his patient and came immediately over to me to check I was ok once he’d seen I was awake. I thought it a bit odd at the time because he essentially abandoned his patient, but it was one of the many things that have made me realise that everyone on my team was taking me very seriously and checking up on me a lot. He looked relieved more than anything. The consultant anaesthetist’s parting comment was that he’d ring the ward the next day on his day off (Saturday) once I’d finished the infusion to check how I was and weigh in on any further plans (he did for the next 3 days).

I had the nurse in charge sat with me until I left recovery at about 3.30 ish. The consultant said he wanted me to stay there longer but I actually felt really good! I wasn’t in pain, I’d had a really good sleep and a bunch of steroids. I felt better than I did on a normal day! My obs were all good except my o2 sats were slightly low so I was put on oxygen for a few days. I got moved up to the ward in time for visiting and teatime.

I’d been warned that I was to keep on top of pain killers because as soon as my nerve block wore off later in the evening, I’d really be able to tell I’d had a major operation. Just before my parents left, my cortisol pump kept alarming because of high pressure so someone had to come and silence it. I’ve had pumps before and usually when they do that it’s because you’ve bent your arm or lying on the line or something and the infusion isn’t going through so I double checked that it was actually working still. I felt “a bit weird” which was mostly why I checked but I also put it down to just coming out of anaesthesia.

Now we know that was the start of my pump not working properly. Part way through the night, I was in a lot of pain. I knew my night nurse was all clued up on my AI because she’d made a point of bringing her team to see me, pointing out my emergency injection kit on my table and saying “if we need it, we do it first, sort out paperwork later”. But pain in itself isn’t a reason to do the injection. Adrenal crisis pain is different though. I could feel exactly where the screws and plate were in my massively swollen arm, I could probably have described which muscles and tendons got moved around. It’s like a fine map type of pain. I said “I’ve got my adrenal crisis feeling” to my excellent nurse and she jumped on it straight away. I said I wasn’t sure if it was just a response to drugs and anaesthetic so she asked me if I wanted my injection and what I wanted to do and I said monitor my blood pressure for 10 minutes. We both watched it steadily creeping down (textbook adrenal crisis for change), then I really did get my crisis gut feeling so she immediately did my injection and things started to improve. She’d spent a lot of time trying to persuade my bay mates to not just have every pain medication on their charts straight away, to wait and see what worked, but she threw the whole lot at me in one go because she really understood that getting on top of the pain fast was important.

But the pump kept alarming. And after trying numerous cannula, positions, not moving, changing the batteries, getting the ITU cannula guy down, we concluded that the pump was broken and I’d need a new one from wherever keeps these special types of pumps once the department opened during the day. Which meant someone had to basically sit with me all night and manually restart it every 10 minutes. I was also scared to sleep and not wake up so my nurse stayed with me most of the time because she could see how anxious I was.

The pump got fixed pretty soon that day but it did mean I’d had an adrenal crisis and had missed getting the optimal amount of steroids at the optimum time. Looking back on it now, I definitely felt rough. But I don’t think I realised how poorly I actually was until much later. Things like I used bed pans, let nurses manoeuvre me around naked and wash me, ate my dinner while lying down, only managed to get underwear on after 3 days, didn’t remotely clean my teeth, stayed on oxygen… these are all things that I’ve *never* had to do or been willing to let other people do for me in hospital before, even though I’d been in hospital for way more physically disabling things and what I’d consider to be more poorly. The biggest one for me was that every time I needed a bed pan (which was a lot!), I’d produce so much urine because of my hormone disorders that I’d basically wet the bed and they’d have to change me and my bed every time until one of the healthcares worked out a system involving careful placement of pads and continence mats, which then got discussed in handover. How embarrassing is that?! But I didn’t care and I didn’t even want to try to find a solution. That’s how poorly I was.

Obviously because I was on an orthopaedic ward, I got reviewed by the orthopaedic reg, who said I was doing well (which I was orthopaedic wise) and that I could stop my infusion when it finished at 2pm. I wasn’t happy with this because that plan was written with me being well at the end of it in mind. But I’d had an adrenal crisis and missed out on at least 12 hours of the pump not working. The reg was a bit patronising and told me I would be fine but equally must’ve thought she should pass what I said on up because she came back with her tail between her legs and said that the medical reg and the anaesthetist had both said that “adrenal patients tend to know what they need so if I’d said repeat the infusion, then they would”. I wanted 12 hours, they gave me 24, no questions asked.

It got a bit confusing chart wise after that because I was talking about double and triple my (baseline) oral dose of Prednisolone, but when the anaesthetist had written up my chart in recovery, he’d already written it as double/triple that. But the next person to look at my chart didn’t know that, so they then tried to double or triple my already double or tripled chart (if that makes sense!). It would have been fine had the infusion worked, but because I repeated the day basically, they should’ve moved my entire chart back a day, but what they actually did was give me both pred and IV HC at the same time for one day, which meant when I went down to my double pred getting ready for discharge, I hadn’t had the middle stage so it was a massive drop between the two and made me have another mini crisis. I mostly knew this because I started crying a lot which isn’t something I do even in hospital! Then other things like my BP and oxygen and blood sugars went a bit skewed. My PTSD/hyper vigilance/people are trying to kill me panic set in but the nurses were great at realising I wasn’t “just” having a panic attack, took me seriously and went to ask the medical reg who slowed down the taper a bit more and put be back on IVs for 24 hours until they could eventually hunt down an endocrinologist in the north east of England to give them better advice.

I had the same night nurse as the first night for 3 nights and a really good day nurse for a few days, handing over to each other and it was honestly like the dream team. I’ve never felt so safe in hospital. There was also a really good orthopaedic Advanced Nurse Practitioner who could have turfed me out to a medical ward because my shoulder was fine, but he was determined to make sure I got home as safely as possible, not just quickly. Considering I was there for 6 days, I only had 1 blip with the steroids, when someone refused to give me them and I had to argue a bit. But I knew it would get sorted fast once this ANP came back on shift and it did. I was so impressed with how they handled everything to do with me. I really did have the VIP treatment this week.

My orthopaedic surgeon came to follow up on me and had said how he’s glad we’d made the choice to go with the major surgery rather than keyhole because when he’d opened me up he could see I’d lost a lot of bone from the front from dislocating it so many times and because of my osteoporosis. It meant he’d had to add in an extra bridge or something to make sure the screws were as tight as he could get them so I’d have to be especially careful protecting the joint for the next few months and we could work on range of movement maybe in 6 months. But the thing that surprised me was he’d seen on my chart I’d had an adrenal crisis and that was mostly what prompted him to come see me as well as sending his junior doctor. He wanted to make sure I was ok too and said “your priorities are: 1) adrenal Insuffiency. Always. I took extra infection measures with antibiotics 2) protect the joint 3) range of movement”. I’m just not used to people caring about me as an entire person rather than just their individual specialities!

Hands down, that was the best hospital experience I’ve ever had. And I can see how all of these people’s hard work and planning and communication really paid off and ultimately kept me from being in ITU even with adrenal crises. One of the few things we hadn’t planned for was “what if the pump breaks” but everyone knew what they were doing and fixed the problem without a fuss. It’s massively restored my faith in medics and I’m so grateful for everyone doing everything they did for me in such a way that I didn’t even notice how much they’d done until I was eavesdropping on the morning I was getting discharged.

For now, I’m not going out much and doing a lot of snoozing. I’m in pain but it’s not agony and I can get myself dressed slowly if I’ve got big enough clothes I can pull around one handed. Pjs mostly! I had a check up where most of the clips were removed except for 3 which are at an awkward angle under my arm, so the wound keeps bleeding a bit. Another week without washing should hopefully resolve that though! Overall, everyone’s pleased with how well things are healing and my alert dog, Hamish, has been doing a fab job at helping me work out how to dose my steroids (more on him later 🙂 ) Fingers crossed things still keep going well!

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.