Category Archives: Sjogrens Diaries – Tales of a Dry Person

Adrenal Insufficiency and Kissing Frogs to Find that Prince

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As some of you may be aware, I have seen a couple of endocrinologists to date for my adrenal insufficiency and I have not connected with either of them. Some may call it ‘Doctor Shopping’, some may say that it is me with the problem because shock horror, every doctor is the right doctor aren’t they and how dare we question them?

Well the answer to that is no, and not all endocrinologists are equal when it comes to adrenal insufficiency – or any endocrine problem for that matter. Because at the end of the day, medical knowledge on any specialty does not begin and end at medical school. It extends to continuing professional development, an open mind and a belief that not all patients fit the standard.

So no, I do not call it ‘Doctor Shopping’, I call it exercising the right to a medical consultation while being treated with understanding, belief and respect.

My Journey

If you have read my previous blogs you will know that my journey with adrenal insufficiency has been a bumpy one and one that was frequently dipping to the area of denial and an intense love-hate relationship with my steroids. If you haven’t read these blogs, here is the link if you fancy reading them. Mind you, they don’t make for exciting reading and you could end up sobbing into your coffee and eating custard creams.

My Blogs on Adrenal Insufficiency

I have had years (and I mean almost six years) of attempts to wean, 1mg every month, 1mg every 2 months, 0.5mg every month, every two months and more recently 0.5mgs every three months. It has been tiring, draining and more to the point it has taken its toll on me mentally as you can probably imagine.

Adrenal insufficiency can give some very specific symptoms when it comes to low cortisol. Symptoms that many doctors disregard because they may not have been listed or studies done to prove them. Now that is fair enough, one can only go on what knowledge one has acquired but then again, the patient should not be dismissed when they report what is happening to them either.

I recall telling one doctor how I was (still am) highly sensitive to bright lights and loud noises and smells. The smell of coffee beans is overpowering to me and everything that I smell is exaggerated. I told him how I get an ache in the tops of my thighs (usually when I would try and reduce my steroids), I told him how I was easily startled with sudden loud noises if they woke me up at night.

‘Those symptoms are not caused by adrenal insufficiency’, was his somewhat blunt response.

It was only when I confided with some people in a support group that I realised that I was not the only one to be hypersensitive to things, or get that awful ache in the tops of my thighs. More to the point, I was not the only one that had my symptoms disregarded and been made to feel like an idiot by the very professionals that were meant to assist me.

Another specialist suggested in the nicest possible way that perhaps I took the odd 4mgs of hydrocortisone for ‘euphoria’ and no, I am not joking about that either. Believe me on this one, if I wanted euphoria then my book reaching the bestseller list on Amazon would do that, or perhaps a ticket to Namibia or even meeting the singer Usher (I love Usher, like proper fan-girl crush) – but 4mgs of hydrocortisone for shits and giggles? I don’t think so.

Promising myself that I would never see another Endocrinologist again, I continued to try and manage my condition while holding down a full time job and waking up at 5am each and every morning thinking that I had gone to Hell in a basket.

What makes this whole thing even harder to deal with is the fact that there is no end in sight. No respite from symptoms, no patient education and support, no protocols in place and no clear cut treatment pathway to assist me other than instructions of taking my preds once a day and everything should be fine (once a day would be fabulous but I have to split my doses into four times a day as they only last a few hours).

So what now?

A few months back I was given a name of a specialist who is reportedly very good. I sat on that info for a couple of months, wondering if I could muster the courage and energy to make contact – you can’t blame me for being cautious.

But as the old saying goes ‘You have to kiss a lot of frogs before you find your Prince’ – not that I am planning on kissing any endocrinologists of course. I will just settle for an open minded, compassionate doctor, a treatment plan and a way of making my prednisone doses last longer than three hours.

Wish me luck.

Samantha Rose Copyright August 2018 ©

 

 

 

Adrenal Insufficiency (My Old Friend)

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Photo – Stock Image

Where do I start with this subject? No really, I am not even joking – I am confused by the whole thing and if you have been following my blog, you are probably face-palming or shuddering at the mere thought of me re-visiting the subject of my adrenal insufficiency and who could blame you? Not me that’s for sure, hell – the subject even makes me cry like a baby.

I have spent over five years trying to wean down from 5mgs, I thought it was less but it turns out that I have been on 5mgs since the beginning of 2012 and have spent since the end of 2012 trying to wean. Now that is a long time to wean, a very long time and many people would not have stuck at it for so long, but go me for trying anyway (repeatedly trying).

Basically I am THE champion supreme at attempting to wean off steroids and although I am proud to own that title, I will have to admit that my body now hates me for all the shit I have put it through and who can blame it?

Messing with my head

Whilst I admire – if not inwardly weep, at the determination of my doctors for attempting to wean me off the preds, I do actually feel frustrated because I go from living in denial that my adrenals don’t work, to finding some level of acceptance (I believe I did a blog on that once) and getting on with life as a steroid dependent person.

Then you can bet your life that once an Endo says ‘Let’s get you off the steroids’, I suddenly become full of hope and forgetting all about acceptance and go through that awful stage of being cruel to my body by reducing the preds and being thrown straight back into the denial stage that always seems to be waiting to jump out at me when I least expect it.

This is followed by the overwhelming sense of desperation when I realise that not only have I lost the best part of 5 years by repeatedly doing this process, I also continue to grasp at fragments of hope thrown to me by Endocrinologists.

What makes it worse is that there is no end in sight because I have been told that the wean could take a couple of years – yes, I said years. Let us not forget the previous five years of multiple failed attempts and poor quality of life because of steroid withdrawal symptoms.

So what happens when I try to wean?

My level of health slowly deteriorates and I find myself in what I call a ‘steroid debt’ where the bad days outweigh the good days and I just can’t catch a break. I wake up at 5am every morning wondering if I am actually alive or not or if I have entered the world of dry retching, dizziness and weak muscles and someone has kicked the shit out of me for good measure.

Does it depend on how much you can tolerate? Is it just a case of ‘toughen up Princess’ and ride it out? Or is it a case of getting to the point where you accept that your adrenals are not going to work properly ever again and you will have to stay on the steroids?

I can go a good few months before I think ‘Stuff this, I have had enough’ and go back to the Endo and tell them as such. By this point they usually agree that despite their promises of ‘We WILL get you off them and SAI from steroid use is nearly always reversible’ to saying ‘I don’t think you are going to be able to do this’ which is what happened last month.

And so the cycle starts again. Only this time it really does end here, well it actually ended the beginning of March when I decided that wasting 5 years of my life to crap health from futile steroid weaning along with placing my body under enormous stress was no longer an option – EVER AGAIN.

Where am I at now?

I am back up to 5mgs of preds which have to have the doses spread through the day because I appear to be metabolizing them too quickly which is rather annoying and somewhat debilitating.

My life begins about 11:00pm every evening because by then I feel almost ‘normal’ compared to during the day where I sleep an awful lot and struggle with things that healthy people can do easily. At 5am I wake up feeling as though I have gone to hell with Cliff Richard singing Millennium Prayer. I then spend the rest of the day trying to get my timing right with taking my pills and not doing too much because my friends, that 5mgs allows me to coast along but not much else in terms of energy expenditure.

I have been told by a doctor that preds are meant to be taken once a day and they ‘should last’ most of the day. Well in my case I can assure you they don’t, I get maybe 3 hours out of them but even then I still get exhausted and sleep as soon as I get home from work.

I know when my cortisol is low because I have very specific symptoms, the worst one was when I woke up at 4am with a sharp pain in my groin, it wasn’t unbearable but it was enough to make me say words like ‘shit’ and ‘Bloody hell’. It was also enough to make me reach for the HC. This happened when I was on 4mgs of preds per day (last month) and I took 4mgs of HC which helped, although I had to endure that pain while waiting for the pill to work which seemed like an eternity even though it wasn’t.

So I can officially confirm that there will be NO more grasping at straws and there will be no more weaning either because I think five years of doing that is long enough, don’t you? Enough is enough.

Thanks to Des Rolph for her unwavering support and phone chats when I was at my lowest with this illness.

Samantha Rose (C) Copyright April 2018

 

 

 

The changing thoughts of a steroid dependent person

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A nice pretty photo to brighten your day – Denmark, WA

(Photography Sam Rose)

It’s been ages since I last blogged for a variety of reasons.  I have been working on my book which will be out for publication next month.

Plus I have been feeling utter rubbish with my health and adrenal insufficiency. Honestly, if I thought having Sjogrens was hard then I was sadly mistaken because having your adrenal glands behave so badly is ten times worse.

It was pretty much decided last year that my adrenal insufficiency was for life and not just for Christmas and after a couple of years of trying to wean off by just 0.5mg of preds every 3 months and feeling like I was going to die – twice, that it was time to call it quits.

Anyway, that is where I am at the moment, living with this horrible imposter that makes me feel rubbish for most of my day and live for my next dose of steroids.  There has to be a better way, another way or surely this is all a big fat mistake – right? Who knows, not me that’s for sure. But here is my daily diary of the thoughts that frequent my head every day without fail.

My 5mgs of preds used to last all day, but now they don’t – I have to split them up and despite what you might have read or heard, some of us absorb drugs quicker than others or just have absorption problems.

5am – Briefly aware of my hands and feet having an altered sensation, the small bones in my hands and feet hurt, the tops of my thighs hurt.  Am I awake? No I am not, I am trying to hang on to the nice dream that my adrenal symptoms are dragging me away from. I refuse to wake because life doesn’t hurt so much when you are asleep. Yes it would be prudent to wake and take my steroids but no, I won’t – let me sleep please and take your dizziness and nausea with you.

7am – I am awake, the alarm has told me it is time to get up, except that I can’t. I feel really dizzy and want to vomit and the tops of my thighs hurt with a period pain type pain. Sometimes the pain is in my lower back as well and it is sharp, but not always.

I sit up and take my 2mgs of preds and then lie back down until 7.30am, not because the steroids have worked because they haven’t by then as they take at least an hour, but because I simply cannot get up. I lie in bed and wait until I feel a bit better.

I briefly flirt with the idea of going to the gym but my leg muscles feel too weak and as I can only just get in and out of the car early in the morning, I think the leg press is out of action, don’t you?

7.30am – I am up, go me! Top Queen for getting out of bed like a champion when I feel so shit, I deserve a medal.

9am – I feel human – almost and enjoy my breakfast, actually I feel pretty good and ‘normal’ whatever that is. I have a confident walk, I can have a laugh and everything is just perfect – until someone decides to put something in the microwave that smells too strong and then my stomach wants to punish me and make me vomit.

But that is OK, I still feel normal like everyone else – except for the cooking smells, but I can ignore them.

10am – This is good, perhaps I don’t need these steroids – think I can ask the doctor to wean me off them. I hate steroids, I hate them more than Celine Dion, I hate them more than celery – I just hate them. Yes that is what I will do, I will ask my doctor to wean me off, I don’t need them and if I am strong then I can get off them – easy!

10.30am – I have been super busy, my face feels like it is being squished in a vice, my head is hurting and I have brain fog. I feel sick and if anyone puts curry in that microwave then I will cry or vomit or even both – a bit like the Exorcist.

And while you are at it, you can turn those lights out and stop talking and laughing because quite frankly it is too noisy and too bright. My muscles are starting to ache and it hurts to get off the chair. But I reckon I can still ask my doctor to wean me off the preds, even though I know I have tried before, this time it will be different.

I feel sick, who in the name of fluffy kittens is heating food up – any food, stop it and stop it right now! Does anyone have any salt or pickles? I will sell my soul for salty goodness, come on, someone must have salty goodness and no, I do not care about my blood pressure.

11am – It’s steroid time! Give me my 1mg of preds and give it to me right now. Come to Samantha you beautiful pretty little white tablet, I love you so much, how could I have ever thought of talking about you so badly and asking my doctor to wean me off you. Do you forgive me Mr Prednisone? Get.In.My.Belly!

12noon – Come on preds, do your magic and I will love you forever.

1pm – What a beautiful day, let’s go for a walk – my goodness I can march like a champ, check me out, I am normal! Who needs the preds, surely not me because I feel normal! Go me, check me out walking like a healthy thing looking all normal and showing off. Adrenal glands, you don’t rule me, I rule you so take that  and stuff it with garlic.

2.30pm – I am dying, no really I am. I am going to sleep so don’t try to stop me. Stop squishing my facial muscles, it is not funny. Shut up everyone, just shut up – don’t eat smelly food, stop teasing me with your salt and just stop everything. Did I say that I wanted to wean off the preds? Really? Are you sure? You are such a liar.

3pm – Hello Mr Prednisone, get in my belly and do your magic, how has your day been? No, I never said wean off, we are mates aren’t we?

3.30pm – Please work quickly, I am nodding off and dribbling down my own cheeks and I feel sick.

5pm – Feeling good sister! I think I can conquer the world, I am wide awake – this is brilliant. Check me out walking up and down those stairs, even when I don’t need to – purely to prove that I can. Actually, Preds – I don’t need you, I am going to ask my doctor to wean me off you because I don’t do dependency my friend so please go and find someone else to invade.

I am going to walk my dogs, work on my book, hug my husband, have a shower, make some tea and feel thankful for my health.

6pm – Don’t mind me, I am just going to fall in the bath, we can walk the dogs and watch a DVD later – I am going to ask the doctor to wean me off the preds. My husband who has been patiently waiting at home for me, nods knowingly – knowing that none of it will happen.

After a soak in the bath, I sit on the edge of the bath because my muscles are refusing to let me stand up. Perhaps I will work on the book tomorrow and just watch a DVD with my husband.

7pm – What a brilliant DVD, I can’t stop yawning this compulsive desire to yawn is taking over. Sorry I haven’t seen you today, haven’t seen the dogs – you are all so lovely and I love you so much, maybe tomorrow?

11pm – Has the DVD finished? How can that be, I only stopped for a snooze. My dogs look at me accusingly and Gordon the cat looks mortally wounded while my husband has resigned himself to that is just how it is. As for me, I feel crap and all I can think about is yes, you have guessed it – steroids.

Accusing looks from my pets

(Photography by Sam Rose)

I take my last 1mg of preds and go to bed. I promise myself that when I see my doctor, I will ask to wean off. Steroid dependency is something that happens to someone else and I am too strong to let it happen to me.

Until I realise that it HAS happened to me and how strong I must be for living this crap day in and day out. In fact, I am going to award myself the title of ‘Champion’ just to make me feel better.

Steroids – our only defense against adrenal insufficiency and the drug we love to hate, The real strength comes from acceptance and learning to cope with the condition which is something that I am still coming to grips with.

I am getting there though, slowly but surely.

Talking of which, I have 90 minutes until my last dose, but whose counting……

Samantha Rose (C) Copyright August 2017

 

 

Adrenal Insufficiency – for life not just for Christmas

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Looking on the bright side of things

(Photograph by Sam Rose – the town of Kookynie, WA)

It’s been a long time since I last blogged about my adrenal insufficiency and the last time that I did, I explained how my adrenals had made a slight improvement on my cortisol production with my morning blood cortisol being normal but my Synacthen test still being inadequate.

Like a drowning woman offered a lifeline, I took this news as a sign that I would recover and get off the steroids forever despite the little sensible voice inside of me whispering ‘Yeah right Samantha’, a voice that I told to shut up but one that like my Mother, was right all along – about everything.

*Well actually my Mum wasn’t always right, I do recall buying a knitted jumper-dress in the 80s and looked diabolical with my skinny legs looking like bits of string knotted at the knees, Mum said I ‘looked like a model’, she lied – I looked like a cauliflower with arms and legs wearing a jumper dress.  But that’s OK, I forgive her*

So what has happened since I last posted on this subject?  Well I had managed to get down to 3mgs of prednisone and have been for just under a year by reducing half a tablet every three months.  Several (failed) attempts to get down to 2.5mgs were made and even going down by just 1/4 tablet, each attempt resulting in me bumping back up to 3mgs with my invisible tail between my legs while begging my body for forgiveness until I felt marginally better and would then try it again expecting a different result.

I cannot emphasize enough just how unpleasant it is to get below 5mgs of prednisone.  The pain is intense, the tiredness is extreme, the brain fog is awful and whilst I would like to put it down to simple ‘rebound effects’ from steroid withdrawal, it is certainly not (in my case) rebound and there is nothing simple about it and trust me, I know the difference.

Living/existing on 3mgs was bad enough but I had been warned that ‘feeling rubbish’ might just be the price to pay for the reduction, but each and every attempt at reducing was having horrible effects on my body which had me wondering what kind of long-term damage I was doing to myself.

Admittedly I had been driving the ‘I must come off steroids’ train and pestering my doctors to take me off them.  Each exasperated sigh would be followed with ‘Go down by 0.5mg and see me in three months’, I would leave the room with faux happiness and telling everyone ‘I am coming off those steroids!’  I would also last a couple of weeks, think that I had gone to hell in a basket and put them back up.

My Turning Point

‘How long have you been trying to get off 5mgs?’ I was asked one day.

Frowning in thought, I replied ‘About 3 years – maybe more’.

This person laughed and said ‘Are you not tired of it, the feeling crap and exhausted and all the symptoms that go with it?  That’s a long time to feel shit’

Sounds of the penny dropping, of everything falling in to place, the feeling of embarrassment about how daft I had been for all these years.  But most of all, it was the stark realization that I would not have treated a friend the way in which I had treated myself  – both mentally and physically.

I remember taking a deep breath and nodding a few times ‘Yes, yes it is and yes I am tired of it’ I replied simply and that my friends, was my turning point and this happened about the second week in December (2016).

Having ignored my adrenal insufficiency for so long in the naive hope that it would go away, I would join support groups on Facebook and then delete my posts and remove myself from the groups because I believed that I did not belong there and that I would get better.

But now I had finally realized that the only way to move forward with this disease was to learn about it, get a plan of action and accept it.  I didn’t have to like it but it was here to stay.

Because waking up feeling unwell, nauseous, dizzy, struggling with feelings of low blood sugar, complete inability to deal with any kind of stress, struggling to hold down a 40 hour week job with an hour a day traveling was hard enough let alone pretending it wasn’t happening.

I had to face up to it in order to accept it and it would be in my best interests to learn about what was happening to me because ultimately knowledge is power and I needed to learn how to manage my adrenal insufficiency because it sure wasn’t going anywhere.

What happened next?

I joined another support group – no really I did!

Recently I came across a UK-based support group and although I am in Australia, I found it to be most helpful with the answers to pretty much all of my questions.  Feeling slightly embarrassed, I quickly paid my membership fee online before I could change my mind.

I printed out some of the information and the treatment/protocol guidelines, read it all several times and then took it to my specialist so she could see where I was getting my information from and that the literature was from a credible source (Dr Google is shit by the way, do not confuse Dr Google with a medical degree).

My specialist looked pretty relieved when I asked her if I could not only put my steroids up but could I also please try the Circadian Rhythm dosing that I had seen as shown in an article on the support group (written by an Endocrinologist).  She knew that I had finally ‘got there’ with my acceptance of this disease and was pleased that I had joined a support group.

I can’t imagine how annoying I must have been requesting repeat Synacthen tests and pushing to wean off the steroids at a huge cost to my health.  It was a clear case of doing the same actions on repeat and expecting a different outcome which by my own admission, must have been bloody frustrating to watch.

The specialist was happy with the information that I had printed out and even gave me an emergency letter to carry around with me in case I needed to go to hospital.  Adrenal insufficiency be it primary or secondary is a disease that is misunderstood and I have heard of medical staff not even recognizing it when patients present in ED so the letter with adrenal crisis protocols can be a lifesaver.

I am now back up to 5mgs of preds divided into three doses.  Now I know that some doctors believe prednisone should last 24 hours but it certainly doesn’t with me and I have split it up in to three times a day with my last dose being at 11pm.

I do appear to be metabolizing it very quickly and if I am resting up at home, then I can tolerate the feeling crappy between my afternoon and bedtime doses because I am not going anywhere and can afford to crash on the sofa and sob into my tea and feel sorry for myself.  (The rest of the dosages can’t be changed either – believe me I have tried and I have tried HC as well in the early days, my body ate that up like a kid in a sweet shop)

The real test will be a busy day at work and ultimately a hectic working week including the journey to and from the office.  Hot temperatures also affect me as does vigorous exercise, last week in Yoga I had to lie down because I felt dizzy trying to do the ‘Downward Dog’ but that is another story.

Stuff that I have learned along the way

What I have noticed is that if I am not busy then I notice the symptoms more which is both a good and a bad thing.  It is a bad thing because you focus on it and feel worse for it but it is also a good thing because you get to know what makes you unwell and what your body needs to feel better.  The secret to this is to find a healthy balance.

I have learned (today in fact) that being late with your steroids is not OK and that thinking that I would be fine missing my 1pm tablet because I was busy with housework, would not have repercussions.  I was wrong, I felt crap and even two hours after taking the steroids, still felt dreadful.

I have learned that pickle juice is the drink of the God’s and can take away muscle cramps and headaches better than any painkiller.  I have also learned that low cortisol symptoms are very similar so it pays to be in tune with yourself to learn the difference – perhaps reach for the pickle juice first.

I have learned that no matter what you say to people, there will always be those that think you can be cured by herbs, raw food, coconut water and other things to heal your leaky gut or adrenal issues but that’s OK, I just sit there and watch them talking and imagine myself popping steroids into their mouth every time it opens while shouting ‘Goal!’ each time I get one in.

But the most important thing I have realised is that whilst I admit to enjoy being a bit of a rebel, sometimes you just have to work with what you have got and make the best of things including (in my case) the ‘new normal’ when it comes to your level of health.

Which reminds me, I have a snazzy looking case for my Solu-Cortef, a shelf in the fridge with jars of pickle juice on it to rival that of any beer fridge, plus steroids in every room and a remarkable ability to tell people where to stick their leaky gut and herbal cures.

Denial – it is not just a river in Egypt, get past it and life starts to look better, well it has for me anyway.

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Looking forward to what 2017 may bring – me and my boys!

(Photograph by Sam Rose)

If you have adrenal insufficiency either newly diagnosed or still struggling to come to terms with it, I totally recommend joining a support group.  The link below is the one I am a member of, but there are others as well so find one that you feel comfortable with.

Support Group for Addisons/Adrenal Insufficiency

Happy New Year to you all.

Copyright Samantha Rose (C) January 2017

Adrenal Insufficiency and steroid reduction

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One Step at a Time – can really take you places

(Photograph by Samantha Rose)

It has been quite a while since I started to reduce my steroids in an attempt to ‘wake my adrenals up’ (my doctors words not mine) and so much has happened since I my last blog update about it.

Firstly I am now down to 3mgs of prednisolone which is a dose I never thought that I would get down to but it has been far from easy.

One of the things that happens when weaning off years of steroids aside from going through withdrawal (and something that nobody warns you about), is that the very disease/illness that you took them for in the first place will often flare up again.

I have had another Synacthen test which has shown quite a bit of recovery but still an inadequate result but hey, any recovery is recovery that I was told would not happen right?

I am also having regular morning blood cortisol tests and my last one which was taken 2 weeks ago; has shown adrenal function within normal ranges! Obviously I am thrilled about this but my specialist has told me that a normal morning cortisol is normal on my 3mgs of steroids and if I didn’t take them or had a particular stressful day before the blood test, it would be different.

So it has been decided that I stay on 3mgs for the sake of my auto immune disease and also because the Synacthen test still shows an inadequate response and that is the one that counts as in how my adrenals work under stress.

On the whole I am doing very well on 3mgs providing there is no stress at work, or I don’t engage in strenuous exercise or I don’t get sick.  The other week I had a high temperature and I felt dreadful and had to triple my dose for three days.

Sometimes at work if I am really busy then I have to stress dose because my 3mgs of preds is simply not enough.  This I will add is on the advice of my doctor.  With adrenal insufficiency I get very specific symptoms such as the feeling that inside my head has gone ‘dead’ – a bit like how your leg feels when you lie on it for too long, all heavy and you don’t want to put weight on it.  My muscles kind of feel like they are burning, like someone is pressing on them (press hard on your own shoulder muscles till it burns and that is the feeling that I get in various parts of my body).

I get a bad headache and it is normally over one eye and painkillers will not relieve it.  I suffer nausea as well, dizziness and the usual brain fog and that is when I have to take 4mgs of hydrocortisone otherwise it gets progressively worse and I am unable to drive home.  Still, it is positive that I recognize it even though it is frustrating that I can’t just stop the 3mgs like a normal person without adrenal insufficiency.

Sadly my joints are now hurting like a bitch and I am getting some pretty nasty AI symptoms back again so this has effectively been a ‘trade off’ because each morning I wake up so stiff in my joints plus pain in my hip joint that it takes about 2 hours to ‘warm up’ and get more mobile. Some days I ponder on my choices and from where I am looking, there are not that many to choose from.

The first choice is weaning off the steroids which is what I am trying to do because if I thought having Sjogrens is bad, I have discovered that adrenal insufficiency really is the work of the devil.  It has been like going to hell in a basket with Cliff Richard on replay and I cannot even begin to tell you how shit you can feel and only someone that has been there will understand.

The second choice is to remain on 3mgs for the time being and stress dose when needed which is what my doctor would like me to do.  This dose is not fabulous for a good quality of life in terms of joint pain, as well as the adrenal symptoms if I am having a bad day.  My specialist has increased my immune suppressants which have made a significant difference to my AI symptoms so I guess this is the choice I have made.

I still dream of stopping the steroids one day because some days I feel ‘normal’ but have been cruelly reminded that I am not when I have overslept and woken up late for my tablets and then I pay the price by feeling awful for the rest of the day like my body has gone into steroid-debt and punishes me heavily for it.

When things go well with my health and I feel OK, it is all too tempting to imagine if I could manage with the medication and I do have to remind myself that it is because of the medication that I get the good days and not in spite of it.

So that is my update and I think it is quite a good one.  A year ago I was in a pretty bad place with a refusal to accept this and advised it would probably be permanent and I have proved that diagnosis wrong and at the same time learned to accept ‘my lot’ so to speak.

I don’t know if my adrenals will get completely better as I find it quite hard to believe that 5mgs of preds shut my adrenal glands down in the first place – that is not what the asthma doctors tell you now is it!

I also don’t know if adrenals can have good days and bad days in terms of steroid production or if the damage to my adrenal glands has been halted by the immune suppressants that I take or if they can get worse again.

But for now I am happy and grateful for the recovery that I have made and if I can give one tip for anyone going through similar, I would say not to give up hope even if it takes years to get there.

Because the journey that is adrenal insufficiency is a long and painful one that needs to be taken slowly and while you may not notice it straight away, time and patience usually pays off in one way or another – either by acceptance of your disease or improvement in your overall condition and whichever one happens, you are a winner.

Samantha Rose (C) Copyright July 2016

 

 

The funny side of adrenal insufficiency

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Always look on the bright side of life (or your adrenals)

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Araluen Botanical Gardens Photograph by Sam Rose

‘What?’ I hear you say, ‘You mean to tell me that there is a funny side to this horrible disease?’  Well let me tell you now, if I don’t see my own funny side; I shall be driven to curling up in a ball and chatting to my own adrenal glands to beg them for mercy – whoever ‘Mercy’ may be.

This blog is to try and find some humour out of what is happening to me and who knows, if it helps you find some humour for yourself then it won’t have been in vain.  All of the following stories are true and have been said to me but descriptions have been changed to protect the innocent and in some cases – daft.

Are you drunk Samantha?

I am not a big drinker, don’t get me wrong I used to be a party girl but now one glass of wine and I am tipsy so one glass is where I tend to stop.

However, when I get low on cortisol one of the most noticeable symptoms is slow speech and an inability to ‘problem solve’ or string a coherent sentence together.  The lower my cortisol gets, the more confused I get and the slower my speech gets.

‘Oh my god, you sound drunk, have you been drinking?’ someone asked me the other week.

Was there any point in saying no that I had not been drinking?  Probably not but I tried anyway and stumbled and fumbled around in my own mind to sort out the words I would need to in order to form that sentence.

The trouble is with low cortisol, you can’t find the right words when you need them so you have to improvise without sounding more confused than you already do.  It’s a bit like Scrabble really, only it’s ‘Scrabble inside your head’ and you rarely win the game.

‘Are you? are you drunk?’ the person repeated.

‘No I am not’ I replied, at least that is what I think I said but it may well have come out as ‘No drunk not, I am’ or some equal pile of mixed up words.  But never mind, the right words were probably there, just in the wrong order so who’s arguing? Not me that’s for sure.

Phoning the health direct line for medical advice

Now that is a laugh a minute let me tell you.  I had to call them the other week as I was very unwell after my synacthen test and could barely get off the sofa.  I do need to emphasize that it was not a 000 call to go to ED but I did need sound medical advice and quickly.  I had started off with the number to call a doctor out who then referred me to the health direct number.

I was put through to a very nice nurse who took all of my details down and decided what to do from there.

I gave her the run down and what happened and told her that I felt weak, shaky, dizzy, tummy cramps and had not pulled myself together since my synacthen test the other day and did I need to take extra steroids as I wasn’t quite sure what to do (Endo didn’t want me just stress dosing for anything which is fair enough).

‘Do you have a droopy face?’ the nurse asked on the other end (she was following protocol and going through the check list so I am in no way berating her for it as she was very nice).

I pondered for a moment, did I have a droopy face?  I don’t know, some days I wake up looking like a well bred boxer but wasn’t sure about droopy.  Grabbing my jowls and trying to tug them down, I tried to work out if I was droopy – I wasn’t.

‘No I haven’t got a droopy face’ I replied, ‘I have adrenal insufficiency and all I need to know is do I stress dose?’

‘Do you have chest pain?’ the nurse asked.

‘No, I don’t have chest pain’ I replied patiently – with my slow speech that probably made her want to ask me about my (non) droopy face again.

‘Have you been drinking?’ the nurse asked.

Resisting the urge to tell her that I had quaffed a cup of Yorkshire Tea in the morning but secretly pretended that it was brandy, I sighed ‘No, I have not been drinking’.

‘Please, can you just advise me what to do and if I need to stress dose as I feel very weak and shaky and I can’t really go far from the sofa, that is all I need to know’ I said to her.

‘Do you have left sided weakness?’ the nurse persisted as she went through the check list.

‘No, I am weak all over’ I said fretfully.

‘Do you have any pains in your head?’ she asked.

Now I had pains in many places but thought it best not to go there.

Anyway, the questions continued and I answered as best as I could and once the nurse had finished she entered the information on the computer for a few seconds while I patiently waited.

‘Right, the results say that you should consult your doctor within 12 hours’ she said firmly, ‘Can you make an appointment tomorrow morning?’

‘It is Sunday tomorrow, my GP is closed’ I sighed.  Sweet mother of god I was going to cry, except that I didn’t have the energy and I don’t produce tears as I have Sjogrens syndrome.

‘There might be an emergency doctor open near you now’ the nurse suggested.

‘I can’t drive, it’s 10pm at night and I seriously can’t get off the sofa, can you check with someone if I need to stress dose?’ I pleaded.

‘I am sorry I can’t answer that but the computer said you need to see a doctor within 12 hours so you could try the surgeries near you tomorrow, I can give you a list if you like’ the nurse suggested in a hopeful voice.

Having visions of the UK comedy program ‘Little Britain’, I could imagine her saying ‘Computer says no’.  I stopped myself from laughing and just replied that yes I would go to the doctor tomorrow and then secretly wondered if it would be safer to take a steroid now or just become all religious and pray that my adrenal glands would behave and hold out for my morning dose.

Anyway, I could not leave the sofa and that was where I remained until my husband got home and I was able to go to bed to ponder on if I had a droopy face or not and whether I should make a suggestion to Health Direct to include adrenal insufficiency on their check list.

Girls’ stuff – please skip this bit if you are an easily embarrassed male

Sometimes, just sometimes with adrenal insufficiency we ladies get issues ‘down there’ and require cream to make it better.

I walked into the chemist a couple of weeks ago to ask for some special cream and the chemist lady did not speak very good English.

‘Do you have this cream?’ I asked her and then said the name of the product.

The lady looked confused and then nodded firmly and led me to one section and after a few seconds of hunting around and running her finger alongside each shelf, she grabbed a box and triumphantly held it up.

‘Here you are, this should help’ she nodded and showed me a packet of mosquito repellent wipes.

Not knowing whether to laugh or cry, or call Health Direct for the suggested assault on my ‘lady-garden’, I spluttered ‘Are you serious?  that isn’t it, this is the cream I need’ and I repeated the name again.

‘This will fix it’ she repeated and tried to hand me the 90% DEET repellent wipes.

By now I was horrified and had even began to doubt myself and stared again at the wipes and wondered if there was some miracle ingredient in the wipes that could help ‘down below’.

‘I don’t get mosquito bites down there thank you, don’t worry, I shall try somewhere else’ I muttered. Thanking her for her help, I left her standing there clutching the wipes wondering where it had all gone wrong.

My ‘lady-garden’ had a lucky escape, I mean those bastards would have taken the skin off – can you imagine that, I mean CAN YOU IMAGINE!!!!!

I left with no cream and then ventured into the next pharmacy with high hopes that someone would be able to help me without trying to burn my vagina off with DEET.

The next pharmacy

‘Hello, can I help you?’ the assistant asked.

‘Yes, do you have this cream?’ I whispered to her discreetly, using my finest Queens English accent.

Set the scene – the chemist was busy, like packed busy – full of people type of busy and the word of the day was not discretion.  An old lady that was asking for everything to be repeated to her, suddenly found her hearing when she heard the word ‘thrush’.

‘Oh if it is for thrush and all that kind of stuff, then it is over there!’ she said loudly and then demonstrated to the aisle that virtually screamed ‘female embarrassment’ in a loud voice.

I found what I wanted and sloped off to the checkout and spotting some Glucogel lollies in a bag by the check out, I threw some into my basket with the cream and waited my turn to pay.

The assistant lifted up the box of cream and studied it briefly, I was almost tempted to ask her if she had tried it before but thought better of it.  Besides, I was starting to feel hypoglycemic and was staring at my back of Glucogel like a starving person because if I didn’t get some in my belly soon I would start sweating like Tony Abbott in a parliamentary debate.

And that brings me to my next issue – blood sugar.

Why don’t you have a banana……

I swear to god if anyone else suggests me eating a banana I am going to go into banana rage and smack them round the face with it and place the skin on their head like a yellow octopus.

Like many people with this disease, I suffer from blood sugar issues and without feeling any hunger or without any warning, I can go hypoglycemic very quickly.  I have to carry glucose tablets in my car and frequently have to eat a few before doing certain activities.

‘Why don’t you have a banana?’ someone asked me one day, ‘It’s far better for you’.

My answer to that is that Glucogel lollies shove my sugar levels up far quicker than a banana.

Besides, bananas tend to go brown and mouldy in the car and can’t be kept in the glove compartment for emergencies and if I am going to go hypo then you can keep your bananas, I want Glucogel and lots of them.

You do know that salt is bad for you right….

No, really?  I never knew that.

‘Oh my god, don’t you put a lot of salt on your food’ people have said to me.

Salt to me is like Danny and Sandy from the movie ‘Grease’ – we just ‘go’ together and at certain times of the day, salt is my best friend.

I have been in cafes where I have poured salt on my food and have had shocked looks from people which makes me want to pour even more salt and make a salt mountain on my food and stick a flag in the top of it saying that I have climbed it and survived to tell the tale.

So when you ask me if I know that salt is bad for me, please forgive me if I turn the entire salt dispenser up in the air and pour it directly in my mouth just to prove a point, although I may just vomit afterwards to spite myself.

Nose like a beagle dog

I am convinced that I have the scenting abilities of a beagle as my sense of smell is so hypersensitive.  I am quite surprised that HM Customs haven’t contacted me to sniff bags at Perth airport, no really they should consider me as I would be very good and would not be averse to wearing a dog harness to do it.

This smell sensitivity can pose a problem with certain types of food as I clutch my nose and try not to gag because someone at work is heating up their lunch.  It is very hard to smile and talk to people when you are holding your breath and trying to convince yourself that their food is not toxic and that chicken and broccoli is a nice healthy lunch and not the poison that your snout thinks it is.

I have been known to hold my breath for a considerable time to get away from people eating their food so that I don’t have to smell it while inwardly wishing that I could catch a bad cold so that my nose would block up and I wouldn’t find their curry/broccoli/lasagna quite so offensive.

We have gone to war, no really we have, I am sure of it

Whilst other people ignore the sound of a plane flying over the house or enjoy the loud sounds of a war movie, my body in fact thinks it is going to war and my adrenal glands yell out ‘we are all going to die – right now!’

‘Can you turn the TV down?’ I plead with my husband who has the volume turned down to the point he can barely hear it.  But I can hear it and those guns and bombs are gonna kill us, my adrenals say so and they don’t lie – do they?

We had a fire drill at work the other week and my head knew it wasn’t real but once again my adrenals decided to be naughty and misbehave and convince my body that we had gone to war with the Martians, which of course took me a couple of days to recover from it.

This is a huge worry for me as my body thinks it is constantly under attack and I am wondering if I should dress up as a soldier when I go out so that I am prepared for battle.

Can you imagine that happening in a shop, a fire alarm goes off and everyone is calm as you like and I am wearing army greens while yelling ‘Save yourselves and your families!’  It’s not funny really, well I guess it could be if I ended up hiding under the ‘feminine hygiene’ section of the pharmacy taking shelter next to ‘those special creams for ladies’.

You have joined the Nana club

I have turned down or cancelled so many plans because I have used up all my spoons (The Spoon Theory) and not just used up my spoons, but probably taken some out of the cupboard in a desperate bid to make it until the end of the day.

I don’t like myself for it either and mentally tell myself off for falling asleep on the sofa while my friends are out living their life and I sleep away mine.

Plans can change on the very morning that they are mean to happen.  It starts off with a battle between my mind and my sofa and goes something like this:

‘Come on Samantha, let’s get going so we can drive to the park’ I say to myself.

The sofa is winking at me in all of its leathery goodness ‘Come on sweetie, just imagine yourself lying on me with that blanket on you.  You don’t need the park, you need me and you know it’. (if sofas could talk, that is what mine would say)

I find with adrenal insufficiency that my day technically ends when my steroid dose runs out and that I seem to metabolize it very quickly so when my sofa asks me to lie down, it is because it has cruelly collaborated with my adrenal glands and that is the decision they have come up with.

Sofa Vs a trip to the park – Sofa wins the battle and I become a Nana, those adrenal glands are so manipulative.

The trials and tribulations of Pilates and adrenal insufficiency

Yes, I said that the word ‘Pilates’ and adrenal insufficiency in the same sentence.

This poses a real trial for me because I start to get low on steroids at around 6.30pm which is when Pilates starts.

Don’t get me wrong, I manage to do some of it but after about 30 mins my ‘slow button’ comes on, my speech becomes slurred, I feel dizzy and the prospect of touching my toes usually ends up with me needing to lie down on the floor while the other girls show off in their Lycra and tie their legs in knots and bows and stuff while I try and make lying down on the ground fashionable.

I usually leave the studio with shaking legs and tremors, flushed cheeks, racing heart and hair like a lavatory brush but hey, I have Lycra on and anything is possible with Lycra because you can fool yourself into thinking that you are fit purely by wearing it.

Oh I had adrenal fatigue once and I recovered…

Did you, I am so pleased for you but I do not have adrenal fatigue, my adrenals are insufficient. They are not tired, they are not taking a break from all the hard work that they are meant to do and they are not lazy.

They are just slowly reducing in function and the end result is that I am not producing enough cortisol for survival and without my oral steroids I will eventually die and it won’t be a pretty sight either – a bit like Cliff Richard in his leather pants, that isn’t pretty either but let’s not go there.

There is no supplement that substitutes oral steroid tablets and whilst I am not being ungrateful at the suggestion, I have to emphasize that I do not have adrenal fatigue, my adrenals are in a very poor state and the word ‘fatigue’ doesn’t even come into play.

I only wish that I could have a word with them and ask them nicely if they could play the game and stop messing up my life quite so much – temperamental little devils that they are.

I have never heard of that symptom before….

And finally I feel that I have to address this issue and that is where some doctors/nurses claim that because they have never heard of a particular symptom before, you cannot possibly be suffering from it.

A nurse once said to me ‘I have never heard that steroids can cause mood swings, that is not what I learned at Uni’

Looking at her as though she had grown two brains (well one brain would be nice), I decided to not argue as there would really be no point but secretly I wanted to rock back and forth and fear for the future of all adrenal/cushings patients and anyone on steroids that might be in her care.

Some of the adrenal insufficiency symptoms that I suffer from (to name but a few)

  • Salt cravings
  • Vibrating in feet
  • Painful feet – feels like someone is hitting them with a hammer while doing the River Dance on them.
  • Dizziness
  • Nausea
  • Anxiety/on edge
  • Sugar cravings

Some of these symptoms do appear to be recognized by the medical profession but trying to rationalize some of them to other people is like trying to polish a turd and where does that leave us as patients?

I think what scares me most about this attitude is that if the treatment, understanding and belief of our disease begins and ends with what doctors and nurses have learned at university/medical school then I believe that our future is not only uncertain, but quite terrifying.

Anyway, that is all from me for tonight, now if you will excuse me, I am going to take my slow self and go to bed like the Nana that I am with my trusty steroid bottle that I shall place beside the bed ready to greet me (and my droopy face) in the morning.

Samantha Rose (C) Copyright Sept 2015

A day in the life of an adrenal insufficient person

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Since my adrenal insufficiency diagnosis was added to my existing connective tissue disease, my whole life has been turned upside down.

This new diagnosis I will add, has been far more difficult to manage than I could have ever imagined and if I thought my auto immune disease was hard enough, then I was very much mistaken.

Suggestions from well intended people that I have adrenal fatigue and how supplements will cure me because it cured their Aunty/Uncle/Mother etc, are in abundance as are accusations of ‘Are you pregnant?’ when people see the look of pain on my face when I smell food at certain times of the day.

So with all this in mind I thought I should write a day in my life and the symptoms that I get and how I get through it.  I will warn you though, this is a full on whinge alert because we all need to do that occasionally I am sure.

5am – let’s start the day!

I don’t need an alarm to wake me up because my friend ‘dizzy’ does it for me.  I wake up dizzy, like really dizzy and very nauseous and my heart racing and trust me it is not pleasant.

I stare accusingly at my bottle of prednisolone; I say ‘accusingly’ because as some of you may know, I hate them but I love them because my body needs them and I need them for survival so dirty looks aimed at the pred bottle are the closest I can get to an act of rebellion.

Leaning over to the bedside cabinet I take my steroids and feel lightheaded while wishing that I could lie in bed until my old mate ‘dizzy’ had pissed off and left me alone.

Swallowing my precious 5mgs of prednisolone, I remain in bed and close my eyes and wait for the steroids to work, then and only then, will I be able to get out of bed because if I try too soon I will fall on the floor.

At work

When I first wake up, I cannot eat as it takes a while for the nausea to subside so a glass of water is all I can manage. That is just the way it is and instead of fighting it, I go with it as it is easier.

By the time I leave for work I am feeling so much better and count my blessings as I drive the coastal route to work where I can admire the ocean, the parrots and the stunning journey that I am lucky enough to take.

Some times I put music on and sing without a care as to who sees me in the traffic lights.  My energy levels are almost normal, I feel almost normal and it feels pretty good as well.

I arrive at work at 8.30am and only then can I manage some breakfast, trying before that time is futile so I have my cereal with a banana and a hot drink at my desk.

Mid mornings

Mid mornings see me crave salt big time, I dream about salt, nothing else matters except for salt and although I try and fight it, I find myself gravitating downstairs to the kitchen to buy a bag of chips (crisps) so I can satisfy my salt craving and it always surprises me as to how much better I feel once I have had some salt.  Salt makes the world go round, well my world anyway.

Lunchtimes stink – literally

Lunchtimes mean I need to shut my door as the various cooking smells of whatever lunch is being heated up is guaranteed to infiltrate my nostrils in a culinary assault, hit the back of my throat and cause me to gag to the point of dry retching.

I never imagined that the smell of curry or steamed vegetables for instance, could smell quite so pungent, I never realised that the smell of pot noodles or cuppa soups could be so overpowering and who would have thought that cucumber could smell so strong.  Since when did I have a nose and sniffing capability of a beagle?

So what does a person like me do when the smell of food is often the enemy and my stomach doesn’t work properly because when I do eat, I often get tummy cramps afterwards because the food appears to just ‘sit there’ and give me cramps?

I shall tell you what I do, I have cold soup because cold soup has lots of salt in it so I get what I want out of it and it is better than nothing.  I have discovered that cold beef or chicken soup serves its purpose when everything else fails.

I usually bring yogurts in to work and some fruit which is always good and failing that, I have a mug of Milo (cold of course so I don’t have to smell it).

As the day goes on…

As the day goes on, I get more tired and find that my 5mgs of prednisolone will deplete faster on some days than it will on others.  If I am busy/stressed then the running around or whatever I am doing will see me ‘crash’ by around 4pm and with the ‘crash’ comes a few symptoms that are not that noticeable by others but are by myself or those closest to me.

My speech becomes slower, concentration is harder and I suffer brain fog. I start to ache more in my joints and have to keep stretching and moving.  The need to fall asleep is pretty intense and I have to watch myself that I don’t nod off at inappropriate moments but sometimes it feels like I have been slipped a sedative as I fight the desire to sleep and wrap myself up in a blanket because I feel the cold.

At home

Once I am home, I am tired and completely drained and depleted of energy.  My two dogs  are twitching and wriggling with excitement pleading for me to either walk them or play ball with them in the garden and some days I can do neither because my body is refusing to cooperate with my need (and that of my dogs) for exercise.

I need to get showered and changed out of my work clothes but everything must be done in stages because this is exhaustion on a whole new level.  Starting with sitting on the bed, I persuade myself that a 2 minute lie down before my shower won’t hurt surely?

Ten minutes later I wake up and realise that I am still in my work clothes and now the cat is sitting on my chest using it as a pin cushion while he makes a bed on me because he thinks that I am there for the night.  My suit is covered in cat fur, I need to clean it but that can wait until the morning.

I manage to shower and change and then go to the living room where my pets are asking for their tea.  The sofa is teasing me and I so badly want to lie on it, every single thing I do is an effort and every task seems mammoth.

My evening on the edge

Another ‘gift’ that my adrenal insufficiency gives me is that I get very bad anxiety that simply cannot be rationalized, I get irritable and snappy but most of all this kind of anxiety is so strange that I cannot explain it or make sense of it but I am most definitely on the edge.

Anxiety like my mate ‘dizzy’, is a regular ‘friend’ because it seems to arrive like clockwork along with the fast heartbeat that makes its presence known at around 6.30pm every single evening when my steroid dose runs out and my cortisol production runs low.

‘Your heart is racing’ My husband said when he was hugging me on the sofa one night.

Racing?  Yes, that kind of sums it up but for want of a better description I would say that ‘working harder than normal’ probably suits it better.

Because that is exactly what it feels like, my heart feels like it is working pretty darned hard and more to the point, I am aware of it.  It’s not scary but it makes you tired and it is made worse when something makes you jump and being easily startled seems part and package of this whole adrenal issue.

It has put a whole new meaning to the word ‘jump out of my skin’ which is why I have stopped watching films like Wolf Creek and that is a crying shame as I have a thing for John Jarrett the leading actor.

Wired for sound

‘Can you turn the TV down?’ I say almost every evening to my poor long suffering husband who ends up watching one of his favourite movies with the sound down so quietly that he can barely hear it.  Except that I can hear it, I can hear every whisper from the actors to the point that they may as well shout.

As the evening goes on my sensitivity increases.  Everything is loud, it is loud when it shouldn’t be loud and when it is meant to be loud then it is pure torture and I have come to relish and seek out peace and quiet in the form of no TV and the sound of silence and even then, that can be loud.

Forever is a long time

Having been advised that my adrenal insufficiency is more than likely permanent, I now have to get my head around the word ‘forever’ or should it be ‘for now’ as we don’t know what is around the corner in the form of a cure?

For now though, I eagerly await my next appointment and with that a change of steroids that will hopefully make a big difference to my life.

I await the return of some energy and the loss of brain fog and slow speech, I await the return of my appetite and the loss of my friends ‘dizzy’ and ‘anxiety’.  But most of all, I await the return of the old me, the person that has a good life to lead, a husband and good friends to live it with.

Because I know she is in there somewhere, she has to be and when I find her I shall kick her butt for staying away for so long.

Samantha Rose (C) Copyright September 2015

Steroids – my friend, my enemy and my lifeline

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BBMy dog Brutus is remarkably patient when I talk to him about steroids!

Sometimes, just sometimes I use my blog to sound off so forgive me but today is one of those days.  We all need to let off steam some days and today is my day to do it.

For those of you that have read my previous blogs will know that I take low dose steroids for an auto immune disease, they help with my joint pain, they help with inflammation and they to a point, enable me to hold down a job and live my life to a fairly good standard.

I take 5mgs of prednisolone and that 5mgs has become far harder to wean off than I could ever have imagined or believed and it has become the most important drug in my medicine box.

I used to take high doses of steroids many years ago for asthma which would see me suffer terribly from the side effects and I am well accustomed to the weaning process so when I say it is harder now than it was then, I am not joking.

I am torn between a state of needing the steroids because I know that they work and hating the steroids because I have suffered extensively from their unpleasant side effects.

From experience I know that getting below 5mgs will see me cold, unwell, weak, weight loss, confused, falling asleep at inappropriate moments such as on the toilet, at work or even while talking to someone.

At 4mgs I get stomach cramps, anxiety, nervous, sound/smell reactive as in everything is too loud and smells overpowering.  As for 3mgs – well let’s not go there because I believe it is just a pipe dream.

Once I get below 5mgs; it does not take long for a relapse for the original illness that I take them for to occur and then my adrenal glands proceed to have a party with my immune system and I am not invited.

I can almost envisage my adrenals chatting to my joints and saying ‘Let’s make her joints hurt like a bitch today and tomorrow we can make her mouth dry and flare up the rash on her face’, while my joints happily agree and I pay the price in the most harshest of ways – my own body attacks me from all angles.

Each morning I wake up and my bottle of prednisolone 5mgs are waiting for me by my bed silently taunting me to take them, which of course I do at 7am every morning.

‘How hard can it be to come off these, after all I am only on 5mgs and you can’t be reliant on that dose surely?’ I have said to myself on several occasions which has led to futile attempts to wean off and then run back to the steroid bottle with my tail between my legs apologizing to myself for being so cruel to my own body.

‘I shall never do that again, come to Samantha you beauty’ I would say to the bottle of tablets on my bedside cabinet in a grateful voice and then wash a 5mg tablet down with a cup of Yorkshire tea.

Once back on my 5mg dose, all is well in my world except for intense feelings of shame and ‘steroid guilt’ that I have fallen off the wagon and am back on my full dose.  I feel almost dirty for giving in, a bit like cheating on a diet with a large block of Dairy Milk.

‘I hate this drug, how can I possibly need them this badly?’ I ask myself and then make a vow to try and wean off again in a few weeks time.

Because my friends willpower is in abundance when you are getting the benefits of your steroid dose but you don’t realise just how much they do for your medical condition until you try to wean off them – and so the cycle continues.

It really is a ‘love-hate-loathing-need’ kind of relationship that I have with this drug and a very unhealthy one that is often made worse by other people and their total inability to keep their enormous, nasty and somewhat toxic mouths shut.

‘It’s a shame you are on steroids, you would have quite a nice face’ or ‘The steroids have made you so fat, will you EVER lose the weight?’

Or my personal favourite ‘I would never go on steroids, not after seeing what they have done to you’.

What on earth gives people the right to even say that?  Think it by all means, say it to their friends if they must but to say it to my face kind of makes them look like they have escaped from the ‘house of anus’.

But hey that issue lies with them and not me but as I say ‘house of anus’ and all that.

Synacthen test and those damned adrenal glands

Of course when you take prolonged steroids, there is a chance at some point your adrenal function will need to be checked and mine needed to be checked when I became very unwell when I started to reduce my dose.   This was done in the form of a Synacthen Test.

Short Synacthen Test

I have recently had my second Synacthen Test done to see if I am producing enough cortisol and in less than a 12 month period since my last test, my cortisol results have reduced considerably which kind of makes sense when I think of how unwell I have been feeling lately.

It appears that as well as having an auto immune disease, I now have fairly severe adrenal insufficiency for which I have been told is unlikely to get better as there is a possibility that my immune system has been attacking my adrenal glands.

So now I not only take steroids to keep my auto immune disease under control, I now have to take them because I am not making enough cortisol for on my own and have to supplement them with oral steroids.

Why do I hate steroids?

‘If they help you then why do you hate them so much?’ I have been asked a few times, well I shall tell you.

I hate them because my tolerance line between sanity, self control and boundaries has been blurred when it comes to steroids and now a dose of 10mgs can make me hate the world and everything in it – yes I am THAT sensitive to them.

I hate them because although I need just 5mgs for my disease, it is a dose that is not without the long term risks associated with steroids.

I hate them because if I have an asthma attack, the doctors will automatically reach for the steroids and give me a huge dose with zero regard to what the drug does to me in high doses.  This is usually rationalized by medical staff advising me that ‘you have to be on huge doses for years and years before you get side effects’.  Which of course anyone that has taken prolonged steroids will know this is utter rubbish.

I hate them because on high doses I am aggressive, unreasonable, twitchy, constantly hungry, I ache, I hurt, I can’t sleep and not only do I scare my husband with my 0-60 on the temper scale, but I also scare myself because quite simply it is like having a hostile and abusive lodger within my body and head when I am on this drug and I cannot evict them.

I hate them because they have forced me to be aware of my own endocrine system which is something I have never had to before.  Now the thought of diarrhoea or vomiting can leave me quivering in my boots and catching the flu is not up for discussion as that will involve stress dosing when in fact a normal healthy body copes with stress all by itself without the need to take extra steroids to compensate – except my body is not normal and it certainly isn’t healthy.

I hate them because due to my adrenal insufficiency,  I walk a very fine line between just being able to function to being completely exhausted, fragile and hormonally incompetent in the cortisone department.

And finally I hate them because for the sake of survival, to not take them is simply no longer an option.

Steroids – you totally have to be on them to ‘get them’.

Links

Addisons Disease and Adrenal Insufficiency

Samantha Rose (C) Copyright August 2015

The Adrenal Insufficiency ‘Banking System’ and ‘Steroid Debt’

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Having just been recently diagnosed with steroid induced secondary adrenal insufficiency, I have been struggling to come to terms with the symptoms that come with the long name.

The doctor said he has no idea as to whether or not it is permanent but rather bluntly warned me how hard it is to wean off when you take the drug for your auto immune disease.

Not to mention having to balance the risk of flares from my connective tissue disease when trying to wean which will hinder the tapering off the drug. I will say that for me personally, Adrenal Insufficiency is harder to deal with than my auto immune disease and recently I have started to compare it to a banking system and before you think I am nuts, please read on and humor me.

The Bank of Adrenal Glands

I have my daily quota of hydrocortisone that I take at various intervals throughout the day and if I have a particularly bad/hard/strenuous day and don’t stress-dose; then I end up in deficit – to my adrenal glands.

By this I mean paying the price of muscle weakness, joint pains, confusion, exhaustion and dizziness to name but a few things. So when I take my hydrocortisone the next morning, I still feel like I ‘owe’ my body from the day before and can’t quite get on top of the steroid ‘debt’ and it takes me a while to catch up.

I went to Pilates yesterday which I found exceptionally difficult as I felt dizzy, had chest pains, weak muscles and it got to the point that I had to stress dose halfway through the class.

There I lay like a beached whale on the ground while everyone else was doing marvelous things with their legs and arms and I had to just do random movements because I could not keep up and looked as though I had restless arm/leg syndrome with the feeble movements that I struggled to do.

To make matters worse, this morning I had overslept through my alarm and was an hour late for my steroids.  I was woken up by my husband telling me that I had overslept and was over an hour late with my drugs.

It was one of those moments where I woke up nauseous, very lightheaded, heavy arms and legs and felt so dizzy that I couldn’t get out of bed and had to fumble around my bedside cabinet for my steroids and then wait until they had decided to work.

I could almost hear my adrenals shouting ‘You are SO going to pay for this’ while personally assuring me that the rest of my body would be heavily involved in the assault.

Now I feel like I am ‘further in debt’ to my body and kind of owe it more hydrocortisone and like any other ‘lender’, the interest is mounting up on it as well.

That my friends is my ‘Bank of Hydrocortisone’ and it is a ruthless banker let me tell you and it knows no boundaries in terms of hounding you until you pay up.

Better go as I have a debt to pay in terms of 4mgs of steroids and my adrenal glands are waiting (impatiently).

Help and Support

http://www.niddk.nih.gov/health-information/health-topics/endocrine/adrenal-insufficiency-addisons-disease/Pages/fact-sheet.aspx

Samantha Rose (C) Copyright April 2015

Adrenal Insufficiency – Out of Balance and Wrong

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There is always a bit of sunshine behind every crappy situation

(Photography by Samantha Rose)

I haven’t updated this section of my blog for quite some time but thought now would be as good a time as any to do so as there has been a recent update for me health-wise.

In October last year I was diagnosed with secondary adrenal insufficiency which they (doctors) suspect is steroid induced.

Adrenal insufficiency is where the body does not produce any or enough of the ‘fight or flight’ hormone that helps you cope with stress.  There are many different causes for this and it can either be primary or secondary.

It is a huge topic to explain and I can’t even begin to do it as I am not a medical person but if you wanted to read up on it, here is a link to Pituitary.asn.au which gives some excellent information on the condition.

http://pituitary.asn.au/Kids/ConditionsIntroduction/AdrenalInsufficiency.aspx

Like so many other people that have to take them; I hate steroids and I hate the fact that I need them for my connective tissue disease and totally hate the fact that even on 5mgs I carry extra fluid that while some people claim not to notice; I may as well have bags of water strapped to my body for how it feels to me.

Each time I try to reduce my preds to 4mgs, I develop a whole new host of symptoms that in the past have had me wondering if I was losing my mind as well as well as my zest for life.

Symptoms that I actually had many years ago when I lived in the UK while taking long-term steroids for asthma, but I never told my GP. Would it have made a difference – who knows but I definitely should have sought medical advice at the time.

My blood sugar was always unstable and I would have hypo attacks while out walking or doing anything energetic and had to carry a snack in my handbag when I went out anywhere.

I have clear memories of being with my friend Erica one time on a country walk and my blood sugar going so low that I was cold, clammy and confused.

It was only down to the fact that we found a pub in the middle of nowhere and ordered some food plus some chocolate to tide me over till it was served, that I was able to make the walk back home.

Other symptoms included (and still do) extreme tiredness, inability to react normally or cope with stress or confrontation, sound, light and smell sensitive – the list goes on and the list was ignored up until recently.

I recall about four years ago when I wasn’t even on the steroids, being at our local gym with my arms and legs so heavy and weighted and my chest hurting, I could not exercise and just lay down on the bench press looking like a decorative human ornament wrapped in lycra.

So how long I have had this condition is a mystery but one thing is certain, it got progressively worse until my consultant decided to do an ACTH stim test to see how my adrenal glands were performing.

It is hoped that this will be reversible but how long that will take is a good question. Personally I swing between being hopeful that my adrenals will like Sleeping Beauty; ‘wake up’ one day with the life saving ‘cortisol kiss’.

But then at other times I have my doubts as I have had these symptoms in the UK which could be when the problems started and the damage was caused long ago by previous steroid doses.

So what now?

I have changed from prednisone 5mg to Hydrocortisone and divide my 20mg dose four times a day.  This regime takes some getting used to and is often messed up if I am busy at work or at home if I fall asleep and forget.

Like a finely tuned set of scales, I have no room for negotiation with my adrenals and steroid dosage and my body has no hesitation in letting me know this.

If I am so much as 30 mins late for my tablet, I am punished with dizziness, an ache in my chest, nasty ache in my kidney area, bad headache, confusion, slurred and slow speech and a feeling as though someone has stuffed my mouth out with cotton wool and dried it out and yanked my tongue out and fed it to my dogs.

Every day has to be planned around my steroid dosage and each dose gives you a certain amount of ability to deal with stress and energy expenditure – a bit like ‘The Spoon Theory’ except for adrenal glands, I call it the ‘Steroid allowance’ and if you go into debt with the Steroid allowance, you get charged double – with interest because you really cannot function without steroids.

Before I do exercise I have to stress dose and I learned this rule pretty early on in the diagnosis when I started Pilates and found myself unable to raise my arms and legs after just 20 mins of exercising.

But that is OK, I have a wonderful instructor who has become very good reading my body language and knows when I feel as though I have died and gone to hell in a basket, she lets me lie on the mat while everyone else does marvellous things with their legs and I just feel like someone has tied my own legs in a knot.

Anything that makes my ‘flight or fight’ hormones kick in, requires cortisol so I tend to avoid confrontation or stress and even excitement can see me feeling quite unwell afterwards so my days out lure coursing with my dog tend to need an extra dose of steroids.

Sometimes even the thought of going shopping to a crowded and busy place or doing something that involves strenuous activity has to go in the ‘too hard basket’ as I feel somewhat overwhelmed at tackling such things – although this is better on the hydrocortisone I must add.

I have actually found it quite fascinating how exhausted I can get just by lying on the sofa and how a day off can be spent fast asleep whilst dreaming about being ‘normal’ and then waking up and feeling tired from all that effort of dreaming (makes sense to me anyway).

Work can be a challenge, I am very good at prioritising in my job and it is one of my strengths but sometimes a pile of work on my desk can see me covering my face with my hands while wondering what to do and how to do it.  Luckily I have a brilliant employer that has gone way above and beyond to help me and providing I take my steroids religiously, it isn’t too much of an issue.

The hardest thing for me is knowing when to stress dose and this is usually in situations of diarrhoea/vomiting, surgery, accident or injury etc.  Because basically you just have to know your body better than anyone else, you have to listen to it and do as it asks because not doing so can have severe consequences.

Friends or enemies?

This is where you find out what friendship is all about. Having Sjogrens syndrome is one thing and if you have followed my blog on that, you will know that I have had my fair share of comments such as ‘hypochondriac’ or being accused of making up, fabricating or over playing the pain.

But having another diagnosis added to the mix just sends the same intolerably uneducated people into a frenzy of similar, stupid and judgmental comments to fuel their fire of idiocy.

Comments like ‘Why are you taking another pill?’ or ‘What are you stressed about now?’ Or my personal favourites ‘Is there anything you don’t have wrong with you?’ or ‘When are you going to get better?’

People tend to have a short tolerance with those of us that are sick and because they are healthy themselves, quite often their empathy quota is somewhat in short supply when you don’t ‘get better’ within a few months.

And that my friends, is when you find out who your REAL friends are, who is important in your life and who is not worth being around because of their ignorant and toxic attitude.

The benefits of support groups

Having discovered the Adrenal Insufficiency Support Group on Facebook, I have found it a huge help to speak to others that have the same symptoms which not only validate what I feel but also make me feel less alone.

Because Adrenal Insufficiency like any illness, is a lonely one. The group is like a safe place where we can discuss our issues and offer words of support or advice and whilst this does not ever take the place of seeing a specialist or consulting your doctor, never underestimate how important this kind of support is.

What next?

With a recent blood cortisol test done this week, I now await my appointment with the endocrinologist in April and I shall will keep my fingers crossed that my adrenals have started to ‘wake up’ and in turn, give me a normal life and one that does not require steroids in which to live it.

And if the damage is permanent then I guess like a house full of lodgers, my adrenal insufficiency will have to learn to get along with my good old friend Sjogrens syndrome while I try to get on with my life and not let them interfere with it too much.

Samantha Rose (C) Copyright March 2015