My Story

In 2010 I was in my mid 40’s, at the height of my career as an Executive Manager in a major bank and was getting ready to take 6 weeks long service leave, to spend some quality time with my beautiful husband. We were going on a road trip through South East Queensland down to the Hunter Valley in Northern NSW and I was so looking forward to having a break. On the way home I started feeling really unwell and I just couldn’t shake off an extreme tiredness, joint pain like I had never experienced and abdominal pain. My hands were so sore that even the slightest touch was excruciating. I couldn’t hold my husband’s hand or pick anything up. My hips were so painful that walking normally was becoming difficult unless my husband supported me. We knew something was not right.

As soon as we got home we headed for my GP and a whole list of Specialist appointments followed. Long story short, 2 months later I was diagnosed with Rheumatoid Arthritis (RA) after being first diagnosed with Q fever, Ross River Virus and a list of other false positive diagnoses. My body was not behaving normally and my Doctors and I were to discover over the next 6 years just how abnormal it actually was. I had no idea what lay ahead.

With RA medication on board, I continued to work for another 12 months before my body began to basically break down bit by bit. My last day in the office was Melbourne Cup Day 2011. I was trying to push through the day and getting ready to judge my Departments “Fashion on the Fields” when my Personal Assistant found me in agony in the ladies and rang my husband to come and pick me up.

From that day my life was never to be the same again.

Blog Photo

In 2011, I was diagnosed with a prolapsed bowel which refused to mend despite 3 attempts at conservative surgery. By mid-2013 we knew we had no choice but to accept that I needed a permanent stoma.

In November 2013 I medically retired and became the “proud” owner of a permanent colostomy. It has been quite a journey with my medical team including a Clinical Immunologist, Colorectal Surgeon, Endocrinologist, Orthopaedic Surgeon, Gynaecologist, Ear Nose and Throat Specialist, Infectious Disease Specialist, Neurologist and Dermatologist, all trying to work out what is causing my health issues. I have been called “special”, “unique”, “one of a kind” but really they all believe overall, aside from Rheumatoid Arthritis, I have a rare idiopathic disease (a disease of its own kind).

I have lost count of the number of times I have been hospitalised over the past 6 years. I have had 14 surgeries since October 2010, with the prospect of more ahead.

I thought Rheumatoid Arthritis and a permanent colostomy would be an end to what my body was going to challenge me with. I hoped I could settle comfortably into medical retirement with my husband but I soon came to realise that my life was going to be an ongoing medical adventure.

In October 2014 my left femur (thigh bone) broke spontaneously. Yes, all on its own, I didn’t fall from a great height or have a major car crash, which is apparently the type of accident I should have been involved in to have the strongest bone in my body break. Mine just broke as I was opening my bedroom door!

It is called a pathological break and my Specialists believe I have a rare genetic bone disease. My bones are extremely dense and marble like and my bone turnover is almost non-existent. We also now know that my bones are dying and much of the soft tissue around my bones is also dead tissue.

12 months after my leg broke, my right femur was also showing signs of disease on MRI with bone marrow involvement so a rod had to be placed in that to prevent an imminent break & repeat medical emergency like we had with my femur break in 2014. I am constantly dealing with multiple foot fractures & none of my broken bones in my legs or feet will heal. My bone pain is excruciating on a daily basis. My left femur which snapped in two is still broken nearly 3 years later and has been diagnosed as a non-union break. I have been on two crutches for 3 years and am in the process of getting a mobility scooter.

The Break

My Left Femur Break – 6th October 2014

I have a long and unknown journey ahead and surgery after surgery keeps me in a constant recovery state but I remain hopeful that we will eventually arrive at a more settled way of life even if my prognosis is unknown. I have been approved for a Level 4 High Care Package and that means that I have been assessed as needing Permanent Residential Care at some point in the future.

In 2015, I decided to start blogging to reach out to others who have found themselves suddenly physically disabled and medically retired from a normal way of life.

Despite my health issues I can still choose to have a happy fulfilled life, different yes, but fulfilled all the same. Three year ago I would have thought a stoma was the end of the world. Today I am so relieved to have a functioning bowel. Five years ago I was facing the fact that Rheumatoid Arthritis was causing radical changes to my life, the biggest being saying goodbye to my Executive Management career & the team I led & loved. My company were so fantastic to me throughout the whole medical retirement process which was such a blessing and I remain forever grateful for their support.

Today I am medically retired and on a permanent disability pension and my husband is my full time carer. My original plan was a healthy retirement full of travel and volunteering and fulfilling a lifelong goal of writing a book. I may not be able to have such an energetic retirement and my leg break & subsequent bone disease diagnosis has brought the travel idea to an end for the moment but I am blessed that I can still write.

I’ll have difficult days like we all do & days when plans & dreams are restricted by health but one thing I know is that if I can focus on counting my blessings on those days, the clouds pass much more quickly.

My biggest blessing is my amazing husband who has walked this journey with me and stands side by side with me today. We have laughed and we have cried over the past six years as each health episode has thrown up new challenges.

We have even managed to laugh at the unpredictability of my health. We can laugh though because we know life can be and is good, even if it is learning to live at a different pace and in a very different way from what is considered “normal”.

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Despite all that my body has thrown at me, I still have an overarching feeling of being “Chronically Content”

So, how on earth can I feel content, even happy, in the midst of all this?

What’s my secret?

The simple answer is I love my life. My health is just one part of it & my chronic diseases have actually brought chronic contentment in multiple areas of my life.

Let me list some of them for you:

  1.  I spend quality time chatting & laughing with my husband every day,
  2.  I spend quality time writing, something I love to do. I have a blog called “My Medical Musings” and I write articles for “The Mighty”
  3.  I spend the majority of my day reaching out to others through my online Facebook forum, Medical Musings with Friends. Connection with people is so important for my overall well-being & Medical Musings with Friends forum gives as much to me as I give to its beautiful members,
  4.  I get excited about any achievement in my life no matter how small. Making the bed each day & making it look pretty brings me joy….even if I mess it up an hour later as I have to collapse onto it in sheer exhaustion. I still did it & that counts for a lot in my book.
  5.  I don’t dwell on what I can’t do, I dwell on what I can do
  6.  I have a strong faith in God. I see His hand on my life in so many remarkable ways…the main one being that I’m “Chronically Content” despite my crazy health. My faith brings me a sense of peace in my darkest hour that really does pass all understanding!

Whatever your chronic disease or grief circumstances, don’t let your happiness be defined by what has been taken away from you. Think upon the things that make you smile. Grab hold of those happy thoughts & ponder upon them until ideas form that you can realistically put into action.

You may love travel but health prevents it. Get travel DVDs or look at travel books or brochures & dream you’re there. It saves the effort of packing & unpacking so there’s an immediate bonus from my perspective.

You may love to eat out but find cafes difficult to access. Take a drive in the car and park in a beautiful spot to have a picnic with your loved one or friend. I’ve done this with my husband many times & it’s been just a perfect date.

Above all try not to worry about things that may never happen. Life is too short to go there & when chronically ill, finding ways to be chronically content is a much better way to use your energy.

May you all find “Chronic Contentment” in perhaps the most surprising ways. Take some time to look for contented moments & build from there.💖

I hope and pray that my story encourages others who are facing an uncertain future and change in life’s direction, to find the courage to not give up but over time learn to accept a new way of life and be brave enough to share their own experiences. I would love to hear others stories as they are all so precious and we can learn so much from each other so feel free to drop me a line anytime. 💗

Take care, Sam xx

“Don’t let your happiness depend on something you may lose”  CS Lewis

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum Medical Musings with Friends. It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m also a Contributor at “The Mighty”  

The Mighty – Author: Samantha Moss

 

 

 

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20 thoughts on “My Story

  1. Dear Sam… I am in awe of your strength… Still making a difference to other people’s lives creating this blog…I too shed a tear reading and recounting your story ..much love dear friend xxxx

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    1. Thanks Kaye, You are such a special friend & your own life story inspires me on a daily basis. We have laughed & cried together over the years but no matter the circumstances we have both been facing we have always made each other smile & resolve to fight on. Love you so much Sam x

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  2. Sam, what a wonderful and truly inspirational blog. I have admired you since I had the pleasure of working with you 12 years ago and now this admiration has only been deepened by reading your story. I so love your sense of humour and pure determination.

    Can’t wait to read more, all my love Judi xx.

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    1. Thanks Judi …I miss our days of hysterical laughter at work. I’m sure you helped me develop that sense of humour…or you just get it! So lovely to hear from you & thank you for your beautiful words. Lots of love Sam xx

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  3. Hi Sam, great to meet a fellow Aussie,and I can so relate to your story. This is probably not the time and place, but I too have incredibly dense bones. Seven times normal, and I have been on long term prednisone, so like you, I should be osteoporotic. A nurse once tried to tell me to watch out, that extremely dense bones could mean a lot of bad things, but she was shushed. Your story reminds me of her words, and that incredibly dense bones also made them brittle. I’m sorry you have suffered such pain. But if you are able to point me to more resources on the bone density I would be very grateful. This is how our community works, by sharing information, because even the best doctors can’t know everything! Thanks for sharing, and all the best to you. Looking forward to further installments!

    Liked by 1 person

    1. Wow, thanks so much for your comments. It is really rare to find someone who has a similar story. My Drs are struggling to put a name to my bone disease but the closest they can get is Osteopetrosis. Generally though adults have mild forms & the severity of my breaks would usually be seen in children with the infantile version. My medical team believe I have a genetic mutation & we have all accepted that it is unlikely we will ever place a name to it. They are writing papers on my case which will circle the academic world so maybe that will reach someone who has further thoughts. My bone turnover is almost negligible & that in conjunction with the high bone density is what is causing the problems.My Endocrinologist tests my bone turnover every 6 months. It would be good if you could get the following blood tests to see what’s happening with your turnover as that would give you an indication of whether a bone break is imminent. Tests are : P1NP; CTX. It has to be a fasting sample between 8am & 9am in the morning.
      I’d love to keep in touch. I’m having more surgery tomorrow on my non healing broken leg but I’ll be on line again in a couple of days. Take care x

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      1. Thanks Sam, I would love to keep in touch too. And thank you for the info – I will do some reading and request those tests! Best of luck for your surgery tomorrow, I hope all goes well. Take time out to heal and take care of yourself. I’ll be out here when you’re feeling up to talking more. Thanks again 🙂

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  4. Thanks Sam, I am sorry it has taken me so long to come read this . Been waiting for life to slow down some, but that is probably not going to happen too soon.I so admire your strength and courage while dealing with so many life changes. The group is a wonderful idea and i am sure many people will be helped just by having an outlet they can share with others going through similar issues. I was diagnosed with MS at age 35…. I was a life coach and crisis worker for over 25 years. I retired at age 62 to help my best friend deal with her Stage 4 lung cancer. I moved into her building to be here closer to her. We looked at my apartment together on Tuesday…she passed away the following Sunday. Bittersweet…but i know I am where I should be. Thanks again Sam…I will be back soon to read more and also share…

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    1. Thanks for your comment Barbara.I am so sorry to read of your friends passing & I can imagine the emotions would have been so wide ranging having been ready to care for her in such a beautiful way. You sound like you are a genuine carer of people & I’m so glad we’ve connected through Medical Musings with Friends. I look forward to chatting with you more. Take care xx

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  5. Dear Sam, I hope you are resting today safe in the knowledge that you have a whole band of people concerned to see that you find some relief and improvement in your pain levels over the days ahead. You are an amazingly positive and inspiring role model to so many people and we are all joined in wishing you the absolute best. Gentle hugs xx

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