Life isn’t always straight forward. Not really a newsflash to say that I know but 12 months ago, as I sat in pain with 2 broken legs, recovering from 2 major surgeries 8 weeks apart and facing a future filled with so many “unknown” elements…… “Life isn’t straight forward”, is what came to mind!
Nothing much has changed today. Life is still not straight forward. It will forever be a winding path.
I was told recently that my bone biopsy results revealed “dead bone”. That’s it. No further explanation as my rare bone disease remains a mystery to us all. A sigh of relief was audible from my Surgeon though as he can sleep at night knowing that we he did the right thing to put a rod up the right leg as it was definitely going to break spontaneously, with no warning, just like the left leg did 24 months prior.
I am relieved too that we prevented an emergency situation but I am also left feeling annoyed at my body, frustrated that it won’t give up enough information to help my medical team find a definite, specific diagnosis. It teases us with snippets of clues and then spectacularly, physically, breaks down in a way we didn’t see coming.
My Endocrinologist keeps saying “Good news, it’s not such and such” whenever a test comes back negative. Last time she said that I explained to her that while it is good I don’t have a blood cancer or some other disease that has been suspected, being told I have a rare bone disease, something that has not yet been given a name and is probably a genetic deformity, an idiopathic disease with an unknown prognosis, is actually worse than being told I have something known by the medical profession.
She asked me why is that worse? She wanted to understand why I would want to know that I have a known disease that could be terminal or that has no treatment?
My answer? I need answers. I need to know exactly what I’m dealing with. I want to know the prognosis. My Drs have no idea the path my disease will take. We have already been surprised by a scary pathological femur fracture and now my bone marrow is being damaged. I am being constantly patched up and enduring difficult surgeries and recoveries as a result. We know I have Rheumatoid Arthritis and my medical team are unsure if this links into the bone disease or not. It’s unlikely that it does.
I want to be able to prepare for what the future holds in some way. We all, in general, like to plan ahead in life. We plan for retirement, we plan holidays , we plan special events. We look forward to things. It’s called living.
I’m in limbo. I’m in pain. I face more surgeries and an unknown future. I’m so tired, no actually I’m exhausted.
I need to deal with this though as answers may not be forth coming, not the sort I am after anyway. I need to be prepared for more of the unknown, more questions than answers. I need to be strong, stay strong. I need to find ways to live in the limbo.
I will find that strength but at this precise moment I need to grieve for what I’ve lost. I know that grieving is all part of arriving at acceptance. When I worked as a Change Management Consultant I used a grief model with organisations dealing with massive change called the 5 G’s of Change:
Griping – this stage is when you feel like you just can’t do this. It’s all too much
Groaning- this stage is the complaining stage.
Groping – this stage you begin to walk forward as if in a forest, moving the trees out of your way so you can begin to see a little clearer
Grasping – You begin to understand what the new situation means
Growing – You embrace the new, find ways to live again and acceptance brings peace.
I’ve journeyed through this model a number of times over the years and I think I might be travelling through it again after my recent “dead bone”. Hopefully I will arrive at the Growing stage very soon.
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”