A Year Later…One Step, Two Steps…Will There Be A Third?

Some dates are forever etched in our memories.

I have a few but there are two I will never forget.

October 6th 2014 is the first.

It was the day my femur broke.  

It was a life changing day. A day that would start me on a journey with a rare bone disease, so rare that even Specialists would stand and scratch their heads at the craziness of it.

None of my medical team know what it is, why I have it, what caused it and none of us anticipated the aggressiveness of it.

Genetic testing even failed to find a bone disease gene. The Geneticist was devastated as it empathised to him how many gaps still exist in genetics. He believes my issue is a rare mutant gene, one of it’s own kind. Unique to me!

To investigate further, would be like finding a needle in a haystack, and would financially ruin us to try and look for it.

Seven years later a second date became forever etched in my memory.

September 6th 2021 is the second.

It was the day I could no longer walk, sit or stand. The day my disability and disease changed my life course, in an unexpected way.

(Please Note: The coloured text throughout this blog post are links you can click on, taking you to other posts written a year ago. They provide the complete background story, if you would like to know more, of these most challenging periods of my chronic disease journey to date).

It was the day that started a three month journey of hospital and full at home care, due to being completely bedridden. I was looking at a future in a nursing home, until I pleaded with my medical team, and hospital physiotherapist, to please let me do “hospital at home”.

Please Let Me Try, is the story of the events that allowed me to escape from hospital on October 14th 2021.

While my husband and I were so thankful they agreed to let me go home, once there we realised we were completely “Overwhelmed and Under Prepared“.

What’s The Situation One Year Later?

One year on and we know my bones continue to get denser but also soft now. We know my bone turnover is negligible. This combination causes major bones, like my femurs, to snap in two as if I’d been in a major car crash. It causes my feet and my ankles to fracture while doing nothing more than wiggling my toes in bed, or walking, with my walker, from the kitchen to the lounge room.

Last count I have seven foot fractures, an ankle fracture, three femur fractures, a right rib fracture, all which try to heal and re-break constantly.

My spine is now affected with severe spinal lateral and central canal stenosis, compressing clumps of nerves. An MRI also shows a left side sacral fracture. My left side from my lumbar to my toes has crippled me in a way we never expected.

My lumbar spine is deemed severely unstable and non operable due to high risk of serious complications.

Other bones throughout my body throb with severe pain and cause functional disability.  I can’t keep having scans on every new threatening fracture or damage, so we wait until something severely breaks, or the pain from a new area significantly impacts quality of life further.

Still Broken

Seven years on and my major left femur break is still not fully healed. It is officially diagnosed as “non-union”. The bone disease will continue to prevent it from healing completely. It prevents all my breaks from healing and caused spinal surgery, on the right side of my lumbar, to fail within three months.

This crazy disease has caused attempted bone graft surgeries, to try and fuse my femur break, to simply dissolve and disappear without radiographic trace.

I’m used to my non-union femur. I know its pain, its restrictions, its abilities. It’s familiar. It’s become a part of me.

I’m the same with my foot fractures. They are familiar. I expect them. I know how to deal with them and I basically ignore them. If one becomes displaced I know to seek treatment but if they stay aligned, all is good. No one can do anything so there’s no point worrying.

My unstable spine is a whole other issue. It’s not one I can easily deal with. It is raw, untreatable and cruel. I have a long road ahead of me.

It’s literally a case of one step, two steps and wondering if there will ever be a third.

Healing Comes In Many Forms

When we think of healing, generally we think of getting better. We expect a person no longer has their disease. They are cured or at the very least in remission.

Healing can absolutely come in this form and it’s something to be celebrated when it does.

What about diseases with no cure, no treatment and they are progressive? As a Christian I believe God can heal anyone, and does completely heal people of all kinds of diseases.

Why some and not others? I really don’t have the answer to this question.

I do think healing can come in surprise packages. We sometimes miss out on seeing a miracle because we have an assumption as to what the miracle should look like.

Let me explain what I mean….hopefully I’ll make sense.

Prayers for my healing from around the globe are always appreciated. I’m not physically healed yet and I don’t think I’m going to be. I do however believe I have been given a very special gift of healing.

The ability or gift to accept my circumstances is healing. I’m not generally weighed down by my disease. I’m happy, content and excited about the purpose I have in my life, despite my extremely limited physical abilities.

A Perfect Peacefulness

I have a peace allowing me freedom from anxiety. It doesn’t mean I don’t worry about things from time to time, but I don’t get distressed or suffer depression. I’d describe any worries I have as cautious concerns. They are healthy considerations, and necessary in order to make balanced life decisions.

To me this is the greatest gift of healing given the aggressiveness of my disease. Stress and anxiety worsen pain. My body screams with pain 24 hours a day. If I wasn’t able to be at peace with my condition, and remain free from unnecessary anxiety, I honestly would be in major trouble.

I absolutely thank God for giving me a “peace that passes all understanding”

And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus”

Philippians 4:7 ESV

If you’re feeling a little swamped by your life circumstances, your chronic illness and disabilities, take some time to pause and ponder two questions:

  • Are you expecting complete physical healing?
  • Are you so focused on being perfectly healthy, you are at risk of missing out on the gift of healing in an unexpected way?

My disease has allowed me to connect with so many people from around the world, through my blog, my support forum, my podcast, my book and online volunteering roles for health organisations.

I love having time to write and perusue this life long passion.

It’s allowed me to spend quality time with my husband who I absolutely adore.

Sure, it’s taken things from my life but, even when we are healthy, life can take us in directions requiring enormous sacrifices and loss.

Becoming Abled

If we can stop looking at our disease as “unfair” and “cruel” and stop thinking “why me”, our outlook can change.

“Why me” can become “why not me”. Sickness is a part of life. Accepting it as your new reality, can help change your disabled world into an abled world.

Peace is the opposite of war. If we stop fighting against ourselves by accepting our new life, warts and all, peace can be invited into our lives.

When peace comes an unexpected healing comes and it’s an amazing gift. The pain remains but our focus shifts. This is the key.

We suddenly stop focusing on our diagnosis, treatments, cures, answers and we start focusing on enjoyable life activities we are capable of.

Pain and disability become a part of our life, rather than the whole of our lives.

My debilitating health crisis a year ago has been one of my biggest challenges. It’s not over by a long shot. If I dwell on my pain, my body and what I can’t do, I end up in a spiral of pain, fear, disappointment and a list of “what if’s”. None of this assists with focusing my thoughts and accepting my circumstances.

When I remind myself to breath, calm down and focus on what I can do, rather than on what I can’t do, my gift of healing returns. My confidence builds, my hope finds its anchor and I I begin to adjust to my newly found circumstances.

This very tangible gift of healing is a gift I pray you will also receive.

Take care

Sam xx

(The Ianni Children, teaching the “Breath Brake” technique)

Medical Musings with Friends

If you’re looking for genuine support, care, understanding and 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 and complex diseases, who truly understand the daily challenges. A warm welcome awaits.

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3 thoughts on “A Year Later…One Step, Two Steps…Will There Be A Third?

  1. “Why me?” “Why not me?” My Mum was an amazing woman, pretty much like you, Sam. In 2009, she was diagnosed with untreatable kidney cancer and we only had a few weeks left with her. On getting the diagnosis, my Mum, understandably was shocked, angry and struggled with the diagnosis. She said, why me? a few times. But within hours, she changed that to why not me? Instead of putting her energy into fighting and being angry, she seemed to find a calmness which helped her to cope. And she coped much better than us. Acceptance, even in the most difficult situations, can make life a little bit easier to deal with.
    Thank you for such a good post and (without you realising it) for giving me a special memory of my Mum.

    Liked by 1 person

  2. Oh Elizabeth, thank you so much for sharing your precious story of your beautiful Mum. I’m absolutely touched to know this post had a special connection for you. I’m so sorry for your loss too. Lots of love xx

    Liked by 1 person

  3. I agree with why not me. Why not me? I have been asking that for years. At first I asked it as a child when older kids got to do things. My mother would try to explain. (it never worked) As an adult I asked why me. Until I recalled my moms answers when I was a teen and could not bring myself to ask for that helping hand up. She would say why not you? Why not indeed, I deserve it as much as anyone.

    Today of course I say why not me when I think of chronic illness. Because of my mom every time I think why me, I hear her say why not you? Indeed why not me? I am no better or worse, I am the perfect one for my issues. Why not me. No valid reason I can think of.


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