Some dates are forever etched in our memories.
I have a few but one is a day I will never forget
October 6th 2014.
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.
Recent 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. We now know 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.
The Facts….This Is What We Do Know
All we know is my bones continue to get denser and my bone turnover is negligible. A combination that causes major bones, like my femurs, to snap in two as if I’d been in a major car crash. It causes my feet to fracture while doing nothing more than wiggling my toes in bed or walking from the kitchen to the lounge room.
Last count I have 7 foot fractures which try to heal and re-break constantly.
My spine is now affected with severe spinal lateral and central canal stenosis, compressing my spinal cord. My hips have avascular necrosis and both of these conditions have progressed from mild to severe in less than a year.
My lumbar spine is severely unstable and non operable due to high risk of serious complications. I’m in too much pain today to even begin to describe it.
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.
Six years on and my left femur is still broken. It is official diagnosed as “non-union”. The bone disease will continue to prevent it from healing. It prevents all my breaks from healing and causes spinal surgery to fail within 3 months.
This crazy disease has caused attempted bone graft surgeries, to try and fuse breaks, 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.
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.
Healing can absolutely come in this form and it’s something to be celebrated when it does.
What about diseases with no cure and no treatment? As a Christian I believe God can heal and does completely heal some 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.
I’m not physically healed and I don’t think I’m going to be. I do however believe that I have been given a very special gift of healing.
The ability or gift to accept my circumstances. I’m not weighed down by them. I’m happy, content and excited about the purpose I have in my life, despite my very limited physical abilities.
Isaiah 41:10 ESV “Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand”
A Perfect Peacefulness
I have a peace that allows 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 and necessary in order to make balanced life decisions.
To me this is the greatest gift of healing given 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”
Philippians 4:7 ESV“And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus”
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 healing?
- Are you so focused on being perfectly well 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, writing opportunities and online volunteering 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 that require enormous sacrifices and loss.
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 brings clarity of thought. 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 that’s an amazing gift.
The pain remains but our focus shifts. This is the key.
When we can find a place of peace and acceptance, we stop focusing on our diagnosis, treatments, cures, answers and we start focusing on enjoyable life activities we are capable of.
The more we add enjoyable life activities to our daily routine, the more our pain and disability become a part of our life, rather than the whole of our lives.
This very tangible gift of healing is a gift I pray you will also receive.
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”. You can check out my published articles at My Author Page
I also write @ Blogs by Christian Women
If you would like to read a little more about my journey, here’s the link to My Story