Wednesday, July 1, 2015

Small fiber neuropathy

This week has been spent living at doctors. Pulmonary doctor on Monday, Autonomic Neurologist on Tuesday and primary care doctor and Dr Shiflet today. My life feels in sane. Add to that a new diagnosis and a disability battle and a court judgement hearing and well, one can tell my week has left much to be desired. 

It's been a humbling week of learning to accept and swallowing hard to be humble enough to trust and have faith despite unpleasant diagnosis and doctor appointments and their outcomes. 

I guess mourning for the life you had and what you prayed would be possible and accepting a different reality is all part of the healing and grief cycle. I have lived in denial far too long. I have felt hope that somehow or someday that I could conquer this or some doctor or researcher out there could help fix this disease. 

I have now seen multiple specialists. I have seen doctors in research and top of fields. I have been poked and examined by so many doctors. My blood and biopsies and spinal fluid has been used by researchers. I've given this fight my all. I can honestly say I have held nothing back. I've given beyond what was humanly possible from me, receiving the help of my Savior and countless angels both heavenly and earthly. I've tried. But there comes a point when the only road left is acceptance. 

With this new diagnosis and it's rapid progression, I am going to have to learn acceptance. I have small,fiber neuropathy mixed with peripheral and autonomic neuropathies. It has progressed so far that I am in sheer autonomic failure. All of my body is affected by it. It's turning my legs and brain to mush. 

It was hard to hear. Hard to digest. But I am grateful for good doctors and great people to help me. I was so grateful that Thomas was sitting next to me helping me. Encouraging me. Being by my side. He is such a good man. He gently reminds me of who is in charge of all phases of our progression not just the phase we call earth life. 

So we will continue to walk this path the best we know how, hand in hand, together. We will continue to trust. We will continue to seek the good. And to find the will our Savior has for us. 

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