Cushing’s Disease & my battle.

So, I’m not really sure how you start these things. I guess I should go back to the start and begin from there. Apologies in advance if it seems like I am rambling but it’s going to be somewhat cathartic writing everything down. As I do tend to bottle all of my emotions up and then end up exploding with lots of tears and melodrama – I should become an actress..

It all began in summer 2012. I had just moved into a lovely house in York with my friends Tori and Edward and was about to begin my final year at University. I worked as a carer for the elderly and disabled and I didn’t drive – so I was walking MILES every day all over York and the outskirts. I was eagerly awaiting the arrival of my student loan so was pretty skint living in the city during the summer so my diet wasn’t the greatest – I was hardly eating! I noticed towards the end of August that I was really bloated and my legs were becoming really painful and weak (I put that down to the amount of walking I was doing!!)

I also noticed I had developed some stretch marks across my stomach, which was really strange because at that time I had a flat stomach (I used to wear bodycon – the thought of bodycon now makes me sick). I ignored all of this, mainly because it was pretty embarrassing!

I visited my Mum in the September and she saw the marks on my stomach and made me go to see the nurse – who also agreed, it wasn’t normal to have such vivid stretch marks, yet no weight around the middle. She was concerned as she’d never seen anything like this before and booked me in to see the GP. The GP immediately said “I think you have Cushing’s Disease, I will refer you to an endocrinologist.”

This was the first time I had ever heard of this illness and believe me, those two words were to become the bain of my life – from then right up until the present day.

So that’s where my battle with Cushing’s Disease began. In September 2012.

Everything then seemed to go downhill, my diet was pretty good (except for the booze) but my face and middle just kept ballooning while my arms and legs were turning into sticks. My clothes weren’t fitting. I was ashamed of my face and belly. I wouldn’t let myself be photographed.

Little did I know that from this moment, this disease was to be really hard on my body – I was to go up 4 dress sizes, gain 5 stone in weight as it manifests itself in extra fat and the deterioration of muscles and joints. I’ve almost lost the ability to walk through muscle weakness and low bone density, developed hirsutism, insomnia, lost the ability to concentrate, witnessed my hair thin and fall out and I’ve become incredibly anxious due to dangerously high cortisol levels (seriously, I mean, 800 times higher than the average Joe, some days I don’t even want to leave my house!!).

I’ve basically become a shadow of my former self. Almost 5 years on, I’m not the Amy I used to be, I don’t recognise the girl that stares back (mostly vacant) at me in the mirror. Cushing’s is hard on your soul too. It’s very depressing to look at yourself and see a monster. You don’t know how you got this way and you blame yourself, you beat yourself up and you can’t help it. You drag those nearest and dearest to you down with you as it seems to be the only way you can stop yourself from drowning in this emotional, physical, torturous roller coaster.

It’s silent. People don’t know or understand what you’re going through – that’s why I’m starting this blog, so people get a better understanding and to reach out to those that are in the same boat. And I really want to hope that it is going to get better. That the people around me get better too – I know I’m putting them through hell and I am so sorry about that.

So from September 2012 up until around the summer of 2013, life was basically shit. I was undergoing every test under the sun, urine tests, dexamethasone testing, saliva tests and went from Pinderfields hospital in Wakefield to the Royal Hallamshire in Sheffield where I was to meet John Newell-Price, a worldwide expert in Cushing’s. When I first met this man, he took one look at my body and confirmed my worst nightmare by stating ‘you definitely have Cushing’s’. It was from there that all of my tests came back ‘inconclusive’, nothing added up yet I had every single symptom!

Fast forward to summer 2013 and things started to get better, I was losing weight, my legs were getting stronger and I felt a lot more ‘normal’. At that time I was on the mini pill (little did I know that it’s been confirmed since my testing in 2012/13, the mini pill blocks the tests and produces inconclusive results! I came off the pill and gradually felt better and better. I was happy in my relationship and I was looking forward to returning to Uni in September.

Eventually, everything seemed to ‘settle’, I wasn’t 100% but I felt amazing compared to the hell I went through in the previous months. I went back to Uni in September, I moved to Huddersfield in February 2014 and started my first full time job in June 2014. I’d lost loads of weight and was fitting into my old clothes again! I saw Newell-Price in May 2014 and he discharged me from his care and put the ‘cushingoid’ appearance and symptoms down to taking the mini pill. I was over the moon, I cried with happiness and genuinely felt like my old self – I didn’t have a brain tumour, hurrah!

Little did I know that I actually had cyclical cushing’s disease, which is exactly what it says on the tin, it comes in cycles. So, my body goes through stages where my cortisol is so high, it destroys my body (physically and mentally) and I then go into remission, so my body begins to heal before shutting down again. The cycles are aggressive and really hard to deal with, making diagnosis incredibly hard. Due to having cushing’s a really long time, it caused other issues such as Polycystic Ovarian Syndrome and Endometriosis, so I was under gynae care from summer 2014 until summer 2016, being passed around 3 different hospitals, still being told they thought something else was causing the gynae issues.

Daniel and I married in February 2015 and had an amazing honeymoon. We then went to Greece with family in July 2015 and I started to notice changes, my face was getting bigger, dresses I bought a few weeks before the holiday wouldn’t fit and I was struggling to walk to and from the beach. I wasn’t experiencing the paralysis I’d experienced before but I was having horrendous joint pain. I would watch as my hands, elbows knees and ankles swelled to size of large oranges. I sort of put this down to the heat and I was covered in bites, so that could have caused swelling.

To be honest, I sort of ignored a lot of the symptoms. We had just moved into our first home together, I’d just started a new job in Leeds and I was really happy. How did I not realise I was seriously ill? My hair was falling out, I was swimming in a constant brain fog, I had bruises that wouldn’t heal, I couldn’t sleep at night and I was gaining weight rapidly for absolutely no reason.

I struggled on through this and in March 2016 my gynaecologist decided that the only way to solve my PCOS and endometriosis (I was on agony most days with this) was to give me Zoladex injections and put me through the early menopause, which would more than likely leave me infertile. It was a tough pill to swallow but I decided to go ahead as I couldn’t handle further cyst ruptures etc.

I had 4 of these and this did solve the abdominal pain. I was so relieved but I was still noticing that my joints and legs didn’t want to work properly. I was constantly really clammy and red and I couldn’t concentrate on the most simple of tasks. I saw my GP and he took my blood pressure which was ridiculously high and put me on ‘red alert’/ambulance watch. He did loads of blood tests and suggested a referral to an endocrinologist again.

As I was really fed up and sick of not knowing what the hell was wrong with me, my Mum and Dad decided to pay for me to go see a private endocrinologist at Methley Park in Leeds who took one look at me, did no examination and had a 15 minute chat about calorie control etc. From this 15 minute chat he diagnosed me with IBS and said my anxiety was due to my Mum having a stroke and basically, I was a drama queen that needed behavioural therapy. I was disgusted and really upset.

I returned to my GP and told him the endocrinologist had said to cancel my NHS referral to Barnsley endocrinology. He was shocked and read the letter from the private Dr and told me he was going to push my referral to Barnsley and also asked me to take some 24 urine test bottles and he will do them for me as he was concerned.

I did these and the results never seemed to come through (did them in August). I was due to see the endocrinologist in Barnsley in October and 2 days before received a phone call from the GP to go see them urgently. I went in and they told me my cortisol levels were 800 times higher than the average person and I needed to see endocrinology asap as they suspected Cushing’s. I explained I was going to see them 2 days later.

So from October 2016 my life has been flipped upside down. I’ve had battles with doctors, consultants and god knows who else but finally, after another referral to Newell-Price in Sheffield, countless tests and scans, it’s been confirmed that I have a 5mm brain tumour causing cyclical cushing’s.

I’ve met with Mr Sinha, my neurosurgeon and I have my op pencilled in for 22 May 2017. Safe to say I am shitting myself but I can’t wait to start my life again once I get through my recovery. Which apparently, is worse than actually having cushing’s itself (LOL).

He explained everything and to be frank, I don’t have much choice. If I don’t have the surgery, the likelihood of dying by the end of the year is pretty high. If I do have the surgery, there’s a chance it could kill me and due to the location of the tumour, it’s gonna be tough to remove so if he goes even 0.5mm to a certain side, I could come out unable to speak and paralysed from the neck down. Brilliant. The reality of it all has set in now and I’m ready for it, I’m determined to get through it and get back to living my life within 2 years. I couldn’t have done all of this without the support from my amazing family and friends.

So, what IS Cushing’s?

 

I started reading up on the symptoms of Cushing’s Disease in 2012 so I’m pretty much an expert. I realised that I had every single symptom on the list. Things that I hadn’t even realised were wrong with me until I gave myself permission to be ill.

I have the stretch marks on my arms, sides and legs. My skin is so weak it is tearing. Cognitive deficiencies. I am someone who prides themselves on their intelligence, ability to think on my feet, to understand things rather than learn them. I’d always been a high achiever. I’d noticed myself seeming almost dumb. I would be looking at someone talking to me and I’d be trying to figure out what day of the week it was. I now find holding a conversation extremely difficult and very stressful. I am unable to engage with people. I find it hard to listen, concentrate and respond. My memory is non-existent. Trying to think is like trying to swim through treacle. I am bruising my arm from putting my handbag on my shoulder. I struggle to heal. I have brittle bones, I fractured my scapula in 3 different places just washing my hair. Lack of libido. PAIN. I am unable to bend my knees to get up and down, I can’t even walk around Tesco these days and some days, I find it impossible to even get out of bed because my body just can’t. There are days my face is so swollen it is hard to see out my eyes as my cheeks inflate. My weight is constantly going up, I can’t wear anything other than leggings nowadays and it’s embarrassing to see people I know who don’t know or understand what is wrong with me, I just look like a fat lass. I no longer sleep, I’m never awake enough to do anything but unable to sleep. Despite losing the hair on my head, I seem to be turning into Chewbacca, pretty sure I could grow a beard! And the main one, the excess cortisol causes stress and anxiety. To put it simply, the choice between a McDonald’s or a KFC causes me so much anguish, it can leave me in tears.

The way my neurologist described the tumour on the Pituitary gland is that the pituitary gland is the conductor and all of my other organs and glands are the orchestra, controlling the body and the secretion of hormones etc.

It’s every girls worst nightmare and it’s so often misdiagnosed or too ‘embarrassing’ to talk about. I would hate for anyone to go through what I have been through. Not only has my life, but also Daniels life, been hindered by this awful disease. We can’t be spontaneous and just go out. We plan things and have to cancel because I’m too ill to do things. I can’t thank him enough for sticking by me, even when I turn into an evil monster and throw pots of hummus at him..

Roll on 22 May. It will be a tough journey and after the surgery I’ll have a whole new condition to deal with, going from far too much cortisol to zero. I’ll be pumped with steroids and I will take a long time to heal and readjust but I’m ready and know that after it is all over, I will look like myself, feel like myself and start to actually live like a normal 20 something year old!

Hands down this has been the hardest time of my entire life but I’m still trying to smile each day and I am so grateful for the support that I have received.

Sorry for the ramblings, but it has been a nice relief to write everything down. I hope that this helps those who don’t ‘get it’ to understand a little more and those who do, how much I appreciate them.

X

2 thoughts on “Cushing’s Disease & my battle.

  1. Jackie Kinsey says:

    Amy you have explained it so well . I admire your bravery and spirit . You are coming up to the hardest test of all but please don’t be scared . The thoughts and prayers of people who care will get you through this xx

    Liked by 1 person

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