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

 

 

For the Love of Books…

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My Peter Kay book – goes down well with a cup of tea

(Photograph by Sam Rose)

Every so often I come across someone that for whatever reason, makes a part of my day worthwhile and today was one of those days.

My husband was off today so we had been making the most of our day off and went shopping.  I had been planning on getting buying a Kindle for quite some time and today we went in to one shop to have a look as I had seen them advertised there for $110.

As we went to the section where the Kindles were, a young guy asked if he could help us, he looked a bit geeky and had a huge friendly grin and gave us a warm welcome.

‘Can you help me with buying a Kindle please?’ I smiled at him, it was hard not to you see – smile at him, he just radiated something that I could not quite put my finger on.

‘I love actual books personally and have a huge collection’ He said in a fretful voice to nobody in particular – almost as though each Kindle he sold would destroy the lives of the precious paperbacks (who knows, that might happen).

I laughed and agreed that there is nothing like holding a book in your hands, the touch and the smell and losing yourself in the work that someone else has poured their heart, life, soul and imagination in to.

‘You like books too?’ He gasped as though he had come across the key to the ‘secret club’ and then checking to see that no-one was watching, he pulled his phone from his pocket and showed me a picture of his home ‘library’ which I will have to admit, was bloody impressive.

We both stood there and admired the pictures of books neatly organised in Author order, standing to attention waiting for someone to grab them off the shelf and enter their secret world.

‘My God that is awesome, you have heaps of them’ I gasped enviably and felt quite embarrassed at my somewhat poor in comparison pile of books on my bookshelf.

‘And that is just on my book case, you haven’t seen what is on my floor’ He nodded proudly causing my husband to laugh. It was like I had unlocked the key to something but I don’t quite know what, because this guy suddenly became animated and had stepped out of his sales assistant role.

I told him how cheap it is to order second hand books from Amazon UK and even with shipping, still beats the books in the charity shops and how I am currently reading a book on criminal psychology.

‘Oh my God I LOVE stuff like that’ he said looking like he was going to burst and then went on to tell me he loves to imagine what life would be like living centuries ago as in some of the books he has read.

‘I have a book about Jack the Ripper – I haven’t read it yet though.  I would have loved to have taken a peak into those times’ I told him, he nodded happily in agreement.

I explained to him that Facebook has destroyed my ability to focus and read a book and how I was trying to cut down on how much time I spend on social media.

‘I don’t have Facebook or social media’ He said firmly.  I will admit to staring at him as though he had two heads – or even three, I mean NO social media????

He went on to say that for every hour he could spend on Facebook he could be learning something constructive, like last week he learned to make excellent coffee and next week he would learn something else so why waste all that time on Facebook when he could be doing things to better himself? He had a good point, a very good point.

I mentioned that I am writing a book and was on the second draft, I didn’t dare tell him what it was about though – that would just be embarrassing, I mean how can you describe a world of talking dogs that have adult social lives and drink dog beer?  That takes a special person to understand that not to mention a certain sense of humour to ‘get it’.

Meanwhile customers were asking us if we could move as we were blocking their way and I still didn’t have my Kindle – but that didn’t matter because this guy was far more interesting than any Kindle I could have bought or any book I could have read.

‘I wish that I could find a book club local to me’ I said wistfully.  I secretly wondered if he was in a book club of some sort, but saying; that he had so many books that he could probably run his own book club and I most certainly would have liked to become a member of it as well.

Never have I seen someone so young have such a passion for books and reading.  All I will say is that wherever that guy will end up working, I hope it is doing something that makes his face light up like it did today.

After searching in various places, he told us that the Kindle we wanted was sold out and then offered to knock some money off the next (more expensive) model (with a back light which I don’t need – or perhaps I do as my eyesight is crap).

I didn’t take him up on the offer but we thanked him for his help and went somewhere else where it was on sale for $90 and I managed to get a protective case for $24 which was a bargain and you can’t beat a good bargain.

My books are now all downloaded on to my Kindle which is in its new case and is charging in the bedroom and is almost good to go. It takes a bit of getting used to not having a back light but as each time I read a book on my phone I end up on Facebook or chatting on my phone which I am trying to cut down on, that can only be a good thing.

But how glad I was to have met someone like him, a young guy (student?) and obviously very creative. To witness someone become so passionate and animated about something was love was comparable to taking a brief step into their world.

When my book is published I shall go back to the store and drop him off a copy, he may read it, he may not but just to have a place on that book shelf of his would be quite a privilege.

As for my Kindle, well it is nice and all that and modern technology has allowed me to store hundreds of books on to one device which I can carry with me without the weight of actual books.

But if I am honest, if I am really honest, there is nothing like the beautifully designed cover of an actual book, with the promise of a whole new world inside it where the characters are waiting to show you what is happening once you turn that first page.

I love books, the smell of them, the feel of them and especially how something so small can be so powerful to the imagination.

Whether or not Kindle will eventually replace actual books remains to be seen but as long as there are people like the sales assistant I met today, there will always be a secret library somewhere in the world.

Samantha Rose (C) Copyright May 2017

Birthdays, Old Age and Pink Salmon

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Gordon reaches the grand age of 15 years old
(Photograph by Sam Rose)

Today is Sunday 9th April – just an ordinary day for Brutus and Rocky, nothing special about it except for plans to take Rocky for a drive to chat to the sheep.

The boys were up at 7.30am ready to go into the garden for the first pee of the day which as any dog will vouch is the best one. Rocky always checks the garden for intruders – invisible or otherwise while Brutus goes to what is now known as ‘The Brutus Tree’ to check to see if any more rats have appeared.

‘Good morning Gordy, how’s it going?’ Brutus grinned at Gordon as he lay curled up on the sofa.

Brutus adores Gordon you see, cleans his ears and his bum and despite Gordon having hardly any teeth, allows the ginger cat to get him in a ‘death-grip’ when he pretends he is an African lion hunting springbok in Namibia.

 

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Brutus and Gordon – brothers from another mother

(Photograph by Sam Rose)

‘Gordon, did you hear me?’ Brutus shouted to his brother. Gordon ignored him and stared boot-faced towards the window and then began to pointedly wash his anus with his hind leg held high in the air.

Looking somewhat hurt and confused, Brutus trotted up to Rocky who was now crossing his legs and muttering something about ‘being desperate for a piss’.

‘Gordon won’t talk to me’ Brutus whispered to the black kelpie.

Rocky shrugged and said something about him getting moody in his old age.

Both boys were let out into the garden and nothing more was said.

‘He looks smaller these days don’t you think, like really skinny?’ Rocky said to Brutus.

Brutus was busy gazing into his tree checking for rats, ‘He is still my big brother and can hunt things in Africa he told me so, I don’t think he is smaller because then he wouldn’t be able to hunt’ Brutus growled without taking his eyes off the tree, ‘Bloody rats – they are hiding from me on purpose’ he added fretfully.

Rocky shrugged his shoulders and trotted back to the patio door to be let back in as it was breakfast time.

As he pressed his snout against the window he spotted the frail cat sitting on the kitchen work surface talking to himself. ‘Everyone is a wanker, I hate everyone, nobody loves me, nobody cares and I am going to puke on the floor’.

Slowly and somewhat unsteadily on his feet, Gordon went to the floor and started making the unmistakable and dramatic sounds of vomiting and trust me, nothing and I mean nothing will make a cat owner sit up and take notice quicker than the violent sounds of a cat throwing up.

He barely puked anything but it was enough to get my attention. Clearing up the tiny bit of sick that I swear he had forced out to be noticed, I petted him and told him how marvellous he was and good on him for sicking up that furball.

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Gordon demands attention by puking

(Photograph by Sam Rose)

‘Yeah right, I don’t believe you love me and I am going to bite you later with my gums and shit in your clean laundry’ Gordon snapped at me and then wobbled off looking like a doddery old man that has lost confidence in his walking stick.

Rocky continued to stare through the window racking his brains to see what could have possible upset Gordon. It didn’t take long to find out either because just ten minutes later my husband came into the kitchen clutching a tin of pink salmon.

‘Happy 15th birthday Gordon’ My husband walked into the kitchen and kissed Gordon on the head and gently lifted him on to the kitchen workbench to have his salmon, which yes I know is unhygienic and all that stuff but I don’t really care.

‘I thought you had forgotten’ Gordon stuttered in his old man voice – a bit like Winston Churchill if you know what I mean.

‘As if we would forget’ I cuddled him – feeling his bones creak.

‘I love you Mum’ Gordon grinned and then promptly bit my hand with his remaining two canine teeth and called me a ‘bitch’.

It was a King that tucked into his salmon this morning, despite having very few teeth he made light work of it and even tolerated me putting on a tie for his birthday photo shoot.

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Gordon – hunting his salmon (in Africa of course!)

(Photograph by Sam Rose)

‘Can I tell my friends that I hunted that salmon in Africa?’ Gordon asked me.

I didn’t dare tell him that he didn’t really have any friends except for Tess and Pippin, but I agreed anyway and it was enough to make him happy. After all, a good imagination and an ability to dream never hurt anyone.

Meanwhile Rocky was outside looking mortified. How on earth did he forget his brothers birthday. Turning round he quickly ran over to where Brutus was to let him know they had some serious making up to do and plenty of arse licking (literally in Brutus’s case).

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Rocky is such a thoughtful little dog

(Photograph by Sam Rose)

After breakfast the boys sat hovering by Gordon watching him eat the rest of his salmon.

‘Gordon we are SO sorry we forgot your 15th birthday, we didn’t mean to honestly we didn’t’ Brutus sobbed. He was totally distressed that he had forgotten and couldn’t stop crying as festoons of snot dripped from his nose and his eyes all red and puffy from being so upset.

Rocky was a bit more dignified but not too proud to admit that he was sorry and tried to bring Gordon his fluffy penguin.

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Gordon is well loved by both of his brothers as you can see

(Photograph by Sam Rose)

Gordon carried on eating and after a few seconds stared down at the boys. His eyes showing every year of his 15 years, the once 7kg cat did actually look quite frail and tiny.

His grumpy old face softened and he replied to his brothers ‘That’s OK, you have remembered now and that is what matters’.

‘I love you Gordon’ Brutus sighed, wiping his eyes and nose as he had been crying that much – guilt does that to Brutus you see. Brutus feels guilty even when he has done nothing wrong. Rocky dug a 3 foot hole in the garden and Brutus cried for days and apologized for it and even went to the police station to insist he be arrested for a crime that he didn’t commit.

‘I love you right back Brutus’ Gordon replied.

Licking his lips Brutus said hopefully ‘I can help you eat some of that salmon if you like, just as a favour of course’.

‘Bollocks’ Gordon replied, ‘Don’t push your luck’ and with a flick of his tail, Gordon turned round and flashed Brutus his bum.

‘He still loves us then!’ Rocky said sounding ever so relieved.

‘Yeah, I reckon’ Brutus barked happily, ‘And Rocky?’

‘Yes Brutus?’ growled Rocky.

‘He is still our big brother’ Brutus nodded firmly, ‘No matter how small he is’ – and there was no arguing with that.

 

Happy 15th birthday Gordon.

 

Samantha Rose (C) Copyright April 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

Brutus learns the real meaning of Christmas

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Brutus

(Photograph by Sam Rose)

Brutus and Rocky were in the living room discussing Christmas and their shopping list. Gordon had just done an Exorcist style vomit over the dining room and had gone back to his food bowl to ‘replenish what had been lost’ much to Rocky’s disgust and Brutus’s admiration.

‘So what do you want for Christmas Brutus?’ Rocky asked him.

Brutus looked thoughtful ‘I don’t want much really, I would like a honking pig as Mum killed mine in the garden, I would like some more flappy toys, a spare gingerbread man, maybe a squeaky Santa and another snake, I would like a new collar and ID tag – not one of those crappy collars, perhaps a doggy stocking, a new camp bed for my bedroom and a new stuffed rabbit’ he finished looking absurdly proud of himself for being what he thought was ‘restrained’.

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Brutus with last years gift that ‘exploded’ all by itself in the garden

(Photograph by Sam Rose)

Rocky gasped ‘Not much? That is a huge amount Brutus and most dogs don’t get that much and some dogs don’t get anything at all’.

Gordon said nothing but stopped eating to listen to the boys talking. Inwardly he was shocked though as Brutus had lots of toys, admittedly some had ‘exploded’ all by themselves in the garden but he never went without that’s for sure.

‘What about you Rocky?’ Brutus asked him. Stretching out on the sofa, Brutus snuggled his head down on the red pillow and waited for Rocky to tell him his Christmas list for Santa Paws. Brutus loves Christmas and every year in the three Christmas’s we have had him, he makes me tell him bedtime stories about how Santa Paws visits all the dogs and leaves them food and bones that their owners have bought them and given to Santa for storage.

Rocky shrugged his shoulders ‘Well last year I wished for my hips to be not so painful and a bit better, but I have already got that present now because Mum bought me special powder to go in my food and they are so much better although I still can’t walk as far as normal kelpies’.

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Rocky is a simple kelpie dog with simple needs

(Photograph by Sam Rose)

‘But I would like some new tennis balls to replenish my collection, I would like a generous slice of turkey if Dad can spare it, I would love to be able to get on the sofa with Mum and Dad and maybe even play with my fluffy penguin after lunch.

‘Of course we usually get a collar each year and I love the Rogz collars and always have a red or a blue one and an ID tag is nice as we usually get one every year as well.

But my best gift is when Mum does her Skype call to the UK and gets to talk to her family and I get to talk to her Daddy – AKA John Stocken because I have met him, I think he could be referred to the doggy version of our Grandad if such a thing exists’, Rocky said knowingly. A wise kelpie beyond his years, Rocky just knows ‘stuff’ and is an oracle of information.

‘You know John Stocken? How?’ Brutus demanded, feeling more than a little jealous of this as he only ever hears my Dad over the phone when he calls me.

‘I have met him’ Rocky said smugly, ‘He came to Perth once and threw my tennis ball and rubber chicken for ages, we had fun, we had cuddles and everything and I slept outside his room for 3 days after he flew back because I missed him so much’.

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Rocky, Dad (AKA – John Stocken/Daddy Stocken, and the rubber chicken – Rocky on the left looking camouflaged!

(Photograph by Sam Rose)

The two dogs fell silent for a bit and all you could hear was the sound of Gordon occasionally crunching his cat biscuit.

‘But Rocky, I don’t understand – most of your presents are not sold in the shops so where would you buy them? How would you get them?’ Brutus asked looking puzzled.

‘That’s just it Brutus, Christmas isn’t about how much money is spent on things or how many toys and bones your owners buy for you, it is about the stuff that money can’t buy.

‘Time with those that love you, video calls to friends and family, nice food, cuddles, turkey dinner, the stuff you can only do or speak about with people you love. You can’t buy any of that in the shops.’

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Rocky creating his own memories on one of our road trips

(Photograph by Sam Rose)

‘Sure having toys and stuff is great but those memories last a whole heap longer than any toy that explodes in the garden’. Rocky finished.

‘But what about my toys, I love opening my toys?’ Brutus frowned.

‘You know out of all the stuff on your list Brutus, the one that is the most important above everything else?’ Rocky asked him.

Brutus shrugged because he didn’t know.

‘The collar and ID tag that Mum gets us and pays to have engraved to say we have a home and family of our own. The rest doesn’t matter’ Rocky said.

Brutus quietly walked off to his bedroom and stared at his bed which contained one of his fluffy blankets, his beloved Tony Abbott doll, his stuffed rabbit, his penguin, his honking hedgehog, his bear, baby teething ring and his deer antler.

It wasn’t a too shabby collection of toys, next to it was a bowl of fresh water and a food bowl, his camp bed and behind that a cupboard containing some more freshly washed blankets in case he shit the bed (don’t ask!) and needed his bum washed and fresh bedding.

He walked back into the kitchen and stared at Rockys bed which had been hand made by Cuzz Bro’s Creations, covered in a red blanket, a Julie Gillard doll, another Tony Abbott doll and a gingerbread man which Brutus thinks is his but it really belongs to Rocky, plus a deer antler, bowl of water and food bowl.

Walking into the dining room Brutus noticed a selection of leashes, head collars, a collar, Rocky’s muzzle and Brutus’s camo harness. Brutus also took in the toy box in the garden packed to the top with toys and his recent birthday present of Fat Cat (flappy cat) and his snake he got from Dee Cole at the Funky Dog Company, as well as shit loads of tennis balls scattered around the garden.

Nothing more was said that afternoon about presents from either of the dogs. Gordon never asks for anything anyway and still has toys from when he was a kitten, even his plastic bed belonged to our cat before him – Bruno and is about 20 years old and Gordon loves it. Gordon likes simple things like bird feathers or being allowed to chew my bras (bastard).

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Gordon  – almost 15 years old and an all round naughty boy and member of the ginger club

(Photograph by Sam Rose)

So today I had to go and do my Christmas shopping and I hate shopping, like really hate it unless I am in a pet shop and then I love it.

‘What would you like for Christmas boys?’ I smiled at them as I was about to leave.

‘Tennis balls would be good and a new ID tag’ Rocky smiled at me.

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I shall have a tennis ball please Mum and lots of cuddles and turkey

(Photograph by Sam Rose)

‘But if we can go to the farm area on Christmas Day so I can catch up with the sheep that would be good as well’ Rocky added.

‘How about you Brutus?’ I asked him.

Brutus stared at me, his red/brown eyes bore into mine, expecting a long list I got ready for his demands of toys/bones etc.

‘If you can see fit to buying me a new honking pig to replace the one you squished in your car that would be nice, and a new ID tag because I have scraped the writing off mine on the wall when I rub myself against the bricks every morning’ Brutus growled.

‘Is that all? Are you sure?’ I asked him, this was news to me – Brutus is the King of Christmas lists and has even resorted to writing his lists on an entire roll of toilet paper to fit in what he wants which involves half of City Farmers.

‘Some turkey dinner would be nice and if I can be with Rocky when you Skype Daddy John Stocken and everyone else that would be brilliant’ Brutus barked at me.

Shrugging my shoulders I smiled at them and went off to do my shopping while secretly wondered if someone had swapped my dog with a newer angelic version.

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Brutus the Good Boy

(Photograph by Sam Rose)

After I had gone shopping

‘Did you mean that?’ Rocky asked Brutus, he could barely believe what he had just heard.

‘I’ve got loads of toys, I’ve got pretty much everything really and as you say, the rest of the stuff can’t be bought’ Brutus said firmly.

Rocky looked at his brother in admiration, nudging Brutus affectionately with his snout, Rocky grinned ‘Except for the honking pig – they are $11.00 in the supermarket because I have checked on Mum’s computer’.

Brutus laughed and wagged his tail ‘Yes, let’s not forget the honking pig’.

Driving

Going in the car to look at the sheep – cost? Priceless

(Photograph by Sam Rose)

Gordon sat washing his anus from the other chair, at almost 15 years old he had seen many Christmases as you can imagine and he had realised long ago that the best Christmas is one that creates memories and not shopping lists, like the time he ate tinsel off the tree and had to shat it out with my help pulling it from his bum (now THAT is a memory!).

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You thought I was joking about the anus!

(Photograph by Sam Rose)

Three hours later I returned with very little in my bag as shopping had been a total nightmare, we don’t have children so not much to buy anyway really. But what there was in my bag; was a packet of tennis balls and a honking pig.

And in the post winging its way to me is an envelope with two bone shaped ID tags for the boys all engraved with the best present a dog could want – their owners details and enough phone numbers on there to show the world we love them.

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The most important things – the famous honking pig, collar, ID tag and a bone. These were Brutus’s first things bought for him when he came out of hospital after being critically ill.

(Photograph by Sam Rose)

Merry Christmas everyone, thank you for the lovely comments and support so many of you have given this page over the years.

Samantha, Gordon, Rocky and Brutus

Samantha Rose (C) Copyright December 2016

Quite Simply – Menopause

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Just because the sun sets on one stage in our lives, it will always rise in another

(Photograph by Sam Rose)

There, I have said it – the very word that many women deny all involvement with or are embarrassed to even say, preferring the words ‘I am at that time of life’ or ‘a lady of a certain age’ but very few will say ‘Hey sweetie, I am in the menopause – let’s have an ovary party and celebrate the retirement of my reproductive organs’

I wonder if there is there an element of embarrassment associated with this time of a woman’s life?  Has society got some unwritten rule that it should not be discussed and to do so is like admitting that you are on the slippery slope down to old age, incontinence, big knickers and genitals like Wallace and Gromit’s mouth (letter box).

I recall once having a discussion about menopause (you know, just women’s talk) with a lady who I shall refer to as ‘Ethel’ in her mid 50s and she said to me in a guarded voice ‘Oh no, I am not there yet, nowhere near it in fact – years away’, then she nodded several times for good measure and self reassurance.

It was said with such ferocity and passion that I could imagine her as an 80 year old lady in a nursing home claiming that her ovaries still have the fertility capability of a nubile 20 year old while saying ‘Still a long way off yet, no menopause for me yet dear’.

Or perhaps when she has passed on, it will be on her grave stone ‘Ethel, died aged 100 years old but by God her ovaries went to the grave good as new’

Tales of Horror…

I am not going to lie though, the stories that I have heard about menopause have been pretty scary.  Things like light bladder weakness (LBL) and peeing yourself if you cough, laugh or don’t get to a toilet straight away are somewhat alarming.

Have you seen adverts showing pads for LBL that omit a pleasant perfumed odour if you ‘leak’, well who in the name of God invented those?  Imagine people get to recognise the perfume that is secreted on these pads and the minute they smell it, they point at you and yell ‘Oh my god, she has pissed herself!’  You may as well put a high viz vest on saying ‘LBL’.

Claims that pelvic floor exercises are next to Godliness obviously have some truth in it and up until now I have never paid much attention to it and why would I?  Clenching myself for counts of ten at bus stops have never been on my agenda, mind you I never get the bus so I suppose I could do it in Coles supermarket with the end result being a pelvic floor you could crack coconuts with.  Now that is something to aim for (cracking coconuts I mean and not urinating yourself).

Hot flushes, mood swings, weight gain – come on ladies, we know the score and have read all about the symptoms.  We have all heard about the Pandoras box of hormones that Mother Nature chucks at us when our time of life is nearing so let’s talk about it and those that don’t like it can turn around and put their fingers in their ears the way they do when Trump gives a speech or poverty adverts come on TV.

The Puzzle that is my Body

If you have read my previous blogs you will know that I have an auto immune disease and adrenal insufficiency.  My fight or flight hormones are not as they should be and sometimes I think that my hormones are having a party and I am not invited but that’s adrenals for you, they are a bit naughty like that.

Anyway, the other month I had my hormones checked for menopause because at 49 years old, surely it has to be on the way, I mean really it must.  My last test was negative and I was in the ‘Who me? I am nowhere near it, years away club’ because at that time I wasn’t anywhere near it and I wasn’t in that famous Egyptian river of ‘denial’ either – I still had the hormones of a non menopausal woman.

But this time I went to get my results from my doctor and I sat patiently waiting for her to read them to me.

She frowned at the results and said ‘You are in Peri-menopause, have you noticed any symptoms?’

Feeling a mixture of shock and ‘where the fuck has my youth gone?’ plus a good measure of happiness and ‘Yee ha, does this mean I am a grown up?’, I told her that no, I hadn’t had any symptoms and I certainly wasn’t peeing myself when I coughed/sneezed or sweating like joint of gammon in a butchers window.

‘Well you are there, your results show you are definitely in it (Peri-menopause)’. She confirmed and then as quickly as you like, she changed the subject on to something else leaving me wondering where my certificate of congratulations was.

Congratulations – I think….

After my consultation, I decided that after that news I should celebrate with a bacon roll and a lovely healthy can of coke plus a bag of chocolate covered peanuts (yes I know, crap food and all that stuff – not one gram of toss was given that day about that).

Nothing can prepare you for how you might feel for being told you are starting menopause.  It’s a normal healthy part of being a woman – even if the symptoms can be awful.  Suddenly you have left the ‘No not me, I’ve got years ahead of me yet’ club, and you have entered the ‘Shit, it’s actually happening’ club.

Whilst munching on my bacon roll, I digested the news and wondered how in the name of fluffy kittens did I not know such a significant process was taking place in my body? I mean really, how. did. I. not. know?

I had plans in my mind that when it happened, I would be greeted with some hot flushes and night sweats that would take the top off my head and blow steam out of my ears and nose while my face went bright red and hot enough to fry an egg on.

I had plans that I would be on the phone to my sister discussing my hot flushes and minge problems in true girly fashion and had I been living in the UK, we could have done that over a glass of wine or three and chocolate coated peanuts.  There are baby showers, hens parties so why not menopause parties, we could have a cake in the shape of a lady-garden and everyone could bless it or something.

And really, why should it not be celebrated when we have gone through so much to get that title of ‘Peri-menopausal’?

Because I actually believe that it should come with a ‘certificate of achievement’ and a trophy to make up for the years of periods, period pain, PMS, plus the vast amount of money spent on sanitary protection and painkillers, not to mention the hassles of birth control and a week of hating anything with penis.

I had plans that I would have sensible and respectable chats with other women at the same stage of life as myself, we could discuss and compare symptoms over a Chai Latte and a custard cream biscuit.  But most of all I had plans that I would know that it was happening, like a gentle tap on the shoulder and the ‘Menopause Fairy’ saying ‘Samantha, it is time – welcome to Peri-Menopause, take my hand and I shall show you the way’.

But no, not even a ‘Catch ya later flappy vag, Estrogen is now leaving the building! Hope you enjoyed the ovarian cyst we gave you last year bitch, enjoy the hot flushes when they arrive and god bless your lady garden because it’s sure gonna need it!’  Nothing, not a thing, no warning – I mean how disrespectful!

It was like some secret hormonal party was taking place in my body and until the doctor told me, I had not been privy to any part of it.  Any hopes that I had of that magical moment of realising something different was happening to me, had been cruelly dashed because I genuinely did not have a clue.

In fact I reckon my ovaries have blindfolded me in the night, kidnapped me and let me out in planet menopause wondering where the hell I am and how did I get there – like Back to the Future with Marty McFly but no chance of turning the clock back.

It was with some elation that I drove back to work that morning, once it had sunk in that is.  Because my body cannot do anything normally, I can’t get coughs or colds because of my overactive immune system.  Even my periods have never really been normal and only lasted 3 or 4 days if that and sometimes they never rocked up at all but then again, adrenal insufficiency can play a nice game of ‘hide and seek’ with your menstrual cycle so I have discovered.

So this news was actually very good to hear because for the first time in a long time, I was normal and that actually feels quite good.

On the way back to the office I sat waiting at the traffic lights in my car, blasting out ‘Rebel Yell’ and feeling very ‘rock chick’. I scoffed the rest of those damned chocolate peanuts like a starving person and rebelliously took swigs of coke from the bottle while waiting for the green light.  It was at that moment that I decided that I was more than entitled to my very own mid life crisis, but what form that will take remains to be seen as I am still planning that one.

At home

‘How did your appointment go?’ My husband asked me when I got home from work.

‘Great, I have started menopause!’ I beamed at him and then quite suddenly felt like a grown up for saying it out loud – did this mean I had to start acting like one?

‘Since when?’ husband asked looking surprised.

‘Doctor said judging by my hormone results it must have been a while, so I don’t know’ I shrugged my shoulders and poured myself a glass of wine.

‘How come you didn’t know? I thought all women knew this stuff?’ he asked.

‘I don’t know but I plan to call my sisters and discuss my hot flushes with them and talk about menopause symptoms’ I told him and then gulped my wine down rather too quickly because I was still thirsty from the bacon roll and the chocolate peanuts.

‘But you haven’t had any hot flushes or symptoms’ my husband started to say.

‘They are coming, I don’t know when but I have heard most women get them and I should think mine are on their way and then I will blow steam out of my ears and nose’ I said knowingly.  Like I would know, my hormones never tell me anything the bastards – but that is how I imagine it to be like and I am sure it will be.

Later that night

I stared at my reflection in the mirror from different angles wondering if I had changed, surely something like this happening means that you notice changes.  Shouldn’t the lady-garden suddenly look like a wizened prune or something, or grow a grey goatee beard just like Billy Connolly’s?

Or would it wear a pair of horn-rimmed old ladies spectacles and look at me with a newly acquired look of disapproval if I didn’t act my age.  But no, I still looked the same and there was no grey goatee panty beard, no horn rimmed glasses and no disapproving looks -nothing at all.

Conclusion

Well now I am officially in the Peri-menopause club, I shall at some point be discussing the hot flushes (when they start) with my sisters over the phone with a glass of wine and lets not forget those chocolate peanuts because I can wholly recommend stuffing a bag of those babies down in celebration when you get this kind of news.

How do I feel? I feel kind of mature, a bit like a grown up that has risen above any childish antics.  I have a kind of peaceful serenity about me to the point I may go and start listening to Cliff Richard and bake muffins (and if you believe that, you believe anything!)

Now if you will excuse me, I have to go and work on the book that I am writing about dogs that talk, do childish things and have social lives.

Peri-menopause – now wearing that badge and totally owning it.

Samantha Rose (C) Copyright October 2016

Useful Links

Menopause Support

Red Hot Mamas

Cliff Richard songs – in a crisis only Cliff will do

Chocolate covered peanuts – your life saver

God love Billy Connolly

 

 

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