Posted in Acromegaly, Adventure, Blessing, Disease, hope, joy, Motivation, Purpose

Learning to Live Again – New Adventure #1

This is another post where I just don’t know where to start.

I feel it is important to give you a little background so you can appreciate the enormity of what I’m about to share.

For those of you who don’t already know, I have acromegaly.  A rare pituitary tumour that causes all sorts of grief and problems (I’ll expand more on that in a later post).  I think it was about 2007 when my diagnoses was finally confirmed.  I say “I think”  because I have a dreadful memory. I like to blame the tumour for that one.

It was long before my diagnosis that I knew something was wrong. I don’t know how long the tumour had been living quite comfortably on my pituitary, some specialists believe it may have nested either after the birth of my first born or shortly after the birth of my second.  There’s no way to know for sure.  My first child was born in 1995 and my second was born in 1998 so it may have been around for some time.

I remember struggling terribly with depression and anxiety which really began or esculated after the birth of my first. It was really bad,  although there were extenuating circumstances,  every medical professional I sought help from told me to suck it up and be grateful for the beautiful little girl I held in my arms. Not even a mention of post natal depression. I can’t help but wonder now if that tumour may have been responsible to a small degree.

As the years ticked by,  the depression esculated exponentially and there didn’t seem to be much I could do to stop it or even ease it.

By the time I was working I had piled on a stupid amount of weight but I didn’t understand why.  My joints began to hurt, I ached all over and I was always tired. The job I had at the time was managing a not-for-profit that mainly provided free or low cost groceries to those who needed a hand up.  The store was located in an industrial building with concrete floors, tin roof, no heating,  no cooling and not much of anything else either.  Although I only worked two and a half days a week I was always exhausted, increasingly tired and so,  so sore.

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Me almost at my heaviest of 223kgs

I tried for years to tell my doctor there was something wrong with me but again,  I was told I was just too fat and needed to lose weight. Problem was, I couldn’t lose weight.  I tried everything, every diet and exercise known to man at that time.  Exercising became just too hard.  The pain of simply walking was unbearable.  I begged my doctor to help but again and again I was told I was just too fat.

I tried to continue living my life but I couldn’t.  I had to quit my job because I could no longer walk,  stand or get any relief from the pain.

I finally decided to see another doctor and I remember at one stage telling him that I’m not aching because I’m fat and weight bearing. If that were the case, why did my hands,  wrists, jaw,  neck ache and burn and hurt so much especially since they’re not weight bearing.

To cut a long story short, my doctor could see that I was very unwell, despite every test returning negative results.  It was so disheartening and depressing. Why was I like this? What on earth is wrong with me?  I began to think it was all in my head.  Was this something I’ve subconsciously created to overcome past hurts and failures?  Surely past stress couldn’t manifest into something this bad.

Finally,  in 2007 I received a diagnosis. Acromegaly.  I sat in my endocrinologist office and wept tears of relief.  To know that it was not in my head and there really is an illness was one of the biggest reliefs of my life.

I travelled from Lake Macquarie near Newcastle to Adelaide in September 2010 just one day before my 36th birthday to have the tumour removed.  It was such an adventure.  I loved seeing more of this beautiful land in which we live and although I was incredibly ill,  I remained wide eyed and completely enthralled on our journey.

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Here I am in Rundle Mall, Adelaide just one day before surgery to remove pituitary tumour.  I had a craving for fresh oranges at the time.

By the time I was ready for this surgery I was quite unwell. My weight had ballooned to over 200kgs (223kgs to be exact,  that’s 492lb or 35 stone). I had lost the feeling down my left side,  I could barely speak,  partly due to swelling of soft tissue and I could not walk unaided. My vision was deteriorating rapidly and I was struggling to see.  My hands stopped working and I could barely even feed myself. The tumour had wrapped around my carotid artery and invaded my cavernous sinus. The surgeon was convinced he would NOT be able to remove it entirely. I could no longer drive and I was forgetting everything.  I even forgot how to cook and I had almost no memory of my past. I used to spend evenings with my sister as she regaled me with tales of my children growing up because I just couldn’t remember.  My mind was empty.

By this stage I had been receiving monthly injections of Sandostatin LAR or Somatuline Autogel for the past three years (from the time of diagnosis until surgery). Gee did this stuff made me sick. My stomach hurt all the time,  I would spend a considerable amount of my day on the bathroom.  My hair fell out, my skin hurt,  and I had a collection of cricket ball sized lumps on my rump at injection site that would become very bruised,  itchy and lasted about three months each.

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I felt like crap constantly.

The tumour was removed successfully and entirely by Mr Santorenos.  Despite being told that I would not make it through surgery,  mainly due to my morbid obesity,  I’m still here to tell my tale.  We were told,  since I was so over weight and so ill,  I could expect to be in ICU for up to six weeks and another twelve on the ward and in rehabilitation – that is of I even survived surgery and didn’t have a heart attack or stroke.

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Here I am back on the ward after leaving ICU. You can clearly see the fashionable nasal tampon, vomit bag and towel to try to relieve my thumping migraine.

I was out of ICU within 12hrs and discharged from hospital five days later.

Then my challenges began. Again. My recovery was incredibly slow,  arduous and painful. Regrettably I thought that everything would just go back to how it was pre-tumour. Oh how wrong I was. Why didn’t someone tell me it would be so bloody hard?  I spent the next twelve months flat on my back in bed.  I put this down to over doing it after being discharged from hospital.  We traveled home via the Great Ocean Rd from Adelaide to Newcastle.  It was stunning, breath taking and totally divine, but I had diabetes insipidus as a result of surgery. Cerebral fluid was leaking from my nose and every time we climbed a small hill in our car my nose would bleed and leak fluid, not to mention my smell and taste had gone after my olfactory glands had been damaged during surgery. This meant I would never smell or taste again. Something that I would have appreciated being told about pre-surgery, even if just to psychologically prepare.

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The beautiful Loch Ard Gorge on the Great Ocean Road. I managed to kill my good DSLR on this trip. Just being sick and clumbsy.

Just at the end of my twelve months of being too ill to get out of bed, where my children had to feed me, toilet me, do all of the housework and everything in between, my husband left. At the time, I never saw it coming. I went into shock, my blood pressure went through the roof and as a result I lost my eyesight. Completely. No one knew if it would ever return. It did three months later. Not only did it return but some four years later, my eyesight (an astigmatism and shortsightedness) has improved so dramatically I need to get a new prescription every twelve months. My optometrist believes I will not need my glasses at all soon.

There has been so much that has happened between then and now. Challenges, crap, really tough times, including an horrific single car MVA just over twelve months ago in which I broke my neck in two places, my collarbone, five ribs and a bone in my ankle. I’ve struggled terribly with depression and anxiety and have found it very difficult to hold down a job with the chronic pain I experience.

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Me in hospital trying to walk again after my accident

I recently left the job of my dreams. I was so incredibly crushed. I loved the job, my work, the people, clients, my boss and my colleagues. Unfortunately the workload became just too much and my body and brain could no longer cope.  It just did not end well and I went into shock and commenced another cycle of grief. I am incredibly thankful that this cycle did not last long, thanks to my family and wonderfully amazing and supportive friends.

I can’t deny that my life has been pretty darn challenging but I am here to give you all hope and hopefully joy in your heart.

Hope and Joy

You see, whilst I was laying in that hospital bed in Adelaide some five and a half years ago, I started a rather rudimentary bucket list. In all honesty I never, ever believed I would be able to check any items off my bucket list, given my health challenges and my lack of financial stability (due to being unable to work for so long and fork out on medical expenses).

A few weeks back, I experienced a few events and read some stuff that has really given me a kick in the pants. This was a culmination of events, including my beautiful boy being beaten by an unknown drugged young man, a friend posting an interesting letter written by an 18 year old to his father and a blog article that, along with a few other things have combined to change my life for the better.

As a result of these events and with enormous thanks to my amazing, supportive, encouraging friends and family, I am beginning to see my bucket list come to fruition. Please remember that I have been told time and time again that I would never walk again, by now I should have been confined to a wheelchair at best. I should not be able to talk and I would be incredibly lucky to have survived beyond my 38th birthday. This year I will celebrate my 42nd birthday and between you and me, I plan to celebrate many more.

Well, I am here to prove those doctors and specialists wrong and offer hope to my fellow Acromegaly sufferers, those who battle mental health, those who can’t find the strength to go on. You can do it. You really can. If I can negotiate my way through this thing we call life, so too can you. Please, I implore you, DO NOT GIVE UP, EVER!

So what is it that I can share here with you today that I have checked off my bucket list?

Wait for it….

My dear friend took me skydiving!

Yes, you heard right. Skydiving.

Now, to most of you this may not be such a big deal, but for someone with a chronic illness, someone who has battled anxiety, panic attacks, depression and bucket-loads of self doubt, Someone who is completely terrified of heights and even more so of flying, this is MASSIVE!

Check out that goofy grin that hardly ever leaves my face. My dive instructor was absolutely amazing and I cannot recommend the team at Skydive The Beach and Beyond, Newcastle highly enough. I cannot thank my dear friend Doug enough either. Without his constant support and belief in me, not to mention his spontaneous suggestion I attend with him the evening before over dinner with Bec, I would never have accomplished this dream. Heartfelt thanks to you Doug.

Yes it was raining, yes it was freezing but it was so flipping awesome I just can’t wait to do it again.

If I had listened to those most of those doctors, specialists and other naysayers, I would not have experienced one of the most amazing thrills of my life. I would not have checked another item off my bucket list, I would not have found the courage and strength to over come. I would not be here today offering encouragement and moral support to you.

Please do not ever give up on your dreams. I can completely understand that life can be one great big fat challenge, obstacle and barrier, but please try to not let it beat you.

This event took place just four weeks ago and I have so many other adventures to share with you since.

Stay tuned and find joy.

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Author:

I'm an unorganised OCD. I'm often late. I procrastinate too much I'm also a Mum, a Partner, a Sister, an Aunt and a Daughter. Not to mention friend. I'm learning to live with a chronic illness called Acromegaly. I live in the leafy, lakeside city of Lake Macquarie in NSW Australia with my Son, my Daughter, my gorgeous Partner, our Chocolate Labrador Lucy and our two chickens Nugget and Popcorn. I've had my share of challenges (which I've tried to turn into opportunities) so I would like to share with you how I've managed to overcome these challenges in the hope that it may encourage you too.

12 thoughts on “Learning to Live Again – New Adventure #1

  1. Shaking with tears of joy my darling friend. I was so relieved that you survived that operation, so impressed by your perseverance of getting back up, each time, after yet another thing knocked you back. When I heard about your car accident I was shaking in fear thinking, “no, she’s fought so hard, she can’t die from this, please” and you’re still going on. You have changed physically and emotionally more into the ‘you’ that I first met in the 80s except you are more full of life, more inspiring and you are ‘you amplified’! You’re an inspiration you beautiful person you oxoxoxo

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    1. Thank you so much my friend for your unwavering love and support over the years. You’re certainly one who had helped me navigate through all the stuff.
      Much love to you always xxxxx

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  2. That was awesome! You are an incredibly strong and inspirational woman. Living with this condition is difficult, and you have overcome that and so much more.

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    1. Oh Karen, thank you so much. I’m feeling so very humbled.
      Is lovely to meet you here BTW.
      I hope you’re having a good day and have many spoons left in reserve.
      Keep fighting the good fight.
      Much love to you xxx

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  3. Absolutely amazing Rochelle, you’ve had it all thrown at you, and come out a better, stronger person because of it all. So glad things are starting to turn around for you mate.much love Fay xo

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  4. Dear Rochelle. Thank you bro sharing and baring your sweet soul at so many levels. Onwards and upwards sweet maiden. Take care and keep fighting the good fight. With much love. Jan in Brisbane

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    1. Oh Rosalie,
      Thank you so much for your kind words and encouragement.
      That is so very cool that you jumped at 65 abs here I was getting worried I was getting too old.
      It’s really lovely meeting you here.
      I sure hope you are having a good day today.
      Love and hugs to you xxxx

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