Ty twin Janette Markley as I was just saying people dont realize WHAT we go through 24/7 with this disease,people may see our posts on here but to live this everyday life is one moment at a time,I wake up never knowing what I will feel...pain from tumours brain to toe,which tumours will flare up today,will.it be at my tolerable pain.level #5 with no choice of controlling it,yes I try,I meditate more than anything,including meditating in my thoughts of my kids,cheerleading work,I may not get out of bed at 6 a.m as I have trouble sleeping,but I still get up& move!I refuse to let this disease beat me! As the twin n I have the rarest form of neurofibromatosis,with tumours growing on & inside our body.nerves,they grow in clusters,some are not seen on an MRI ,doctors are shocked when they do surgery because what they saw on the MRI next to when they open us up in surgery as they see more tumors more clusters of tumors that have clusters of tumors growing on and around those cluster of tumors& it doesnt stop there..words do not describe what I have been told by neurosurgeons about what they see during surgery& one familiar statement from doctors is,how are u alive! Well we made it past our 30 yr.mark that was not expected to live this long,well pish posh apple sause lol I am alive so I choose to live positive and strong& thank God for being able to get out of bed in pain and live with it..fare ups can put me in the hospital but thankfully I havent had a bad flare up in a few months now..I may move slow after I.get up..NOT a morning person but I rest when I can& when I cant& Im in pain,God sees me through this as I work,I then keep busy,work outs help along with staying busy,prayers daily to feel well enough to get up& move..as the twin n I have the rarest form of.this tumors disease,nf1& 2,3,4....we are a neuroscientist dream come true for research and one day I hope to help for this cure..I pray daily that my kids never suffer from this! Give t to me! Let my kids live healthy,happy lives!As I was not as familiar with this disease when I had my children and hormones&changes in hormones set off the tumors disease, pms pre menopause/menopause ,the physical pain sucks,but the emotional and certain learning disabilities, my level of patients in certain areas I hate!I try.to not let this bother me but that noise problem can be VERY difficult to ignore...may sound funny but we cant tolerate certain noises and its worse for us than what others hear..long story but Im ending this chapter of my book for now& one day my autobiography/self help/fight back/belive in me/you book will be on shelves in.stores near u lol..lots to write about from birth tell now,not just about nf.. until then..positive thinking& reacting is my goal for today :-)
Posted on: Sat, 03 May 2014 16:41:34 +0000
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