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As a patient advocate, I am often called, inspiring, motivating, and full of strength despite my adversities.\n\nWhile I want to be all those things in order to reach others and help them through their own inspiring, motivating, and incredible chronic illness journeys, the truth is most days I am just treading water.\n\nI feel every inch of my daily pain. I look in the mirror, and my heart sinks at the reflection of the woman I used to be, let alone the woman I\u2019d like to be now.\n\nWhen we are treading water, we are not drowning. I think that\u2019s an important point. Quite likely to the outside world, we look like we are managing very well.\n\nWhen treading water, your head is still above the ocean, and while a few waves may threaten to crash over, you are generally afloat. Others would have little idea of the struggle going on underneath the calm blue sea.\n\nDoes A Diagnosis Make a Difference?\nThe diagnosis doesn\u2019t change the outcome in terms of treatment or cure. There isn\u2019t any, but it answers so many questions for me, and that\u2019s priceless!\n\nEverything I\u2019ve experienced now makes so much sense. Yes, it\u2019s rare. Yes, it\u2019s a crazy disease. Yes, it\u2019s progressive, and I\u2019m acutely aware of the ramifications of that as my symptoms and my pain levels increase.\n\nBut I now know why, and for some reason, that knowledge removes its power over me. It\u2019s part of me rather than being something attacking me from nowhere.\n\nI hope you enjoy this episode as I share highs and lows and celebrate an amazing diagnostic milestone.\n\nTake care\n\nSam xx\n\nwww.mymedmusings.com \n\n#rarediseaseday\n#Osteopetrosis \n#cancer