Definite Diagnosis, Cancer Investigation, and Treading Water

Medical Musings With Sam

As a patient advocate, I am often called, inspiring, motivating, and full of strength despite my adversities. While 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. I 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’d like to be now. When we are treading water, we are not drowning. I think that’s an important point. Quite likely to the outside world, we look like we are managing very well. When 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. Does A Diagnosis Make a Difference? The diagnosis doesn’t change the outcome in terms of treatment or cure. There isn’t any, but it answers so many questions for me, and that’s priceless! Everything I’ve experienced now makes so much sense. Yes, it’s rare. Yes, it’s a crazy disease. Yes, it’s progressive, and I’m acutely aware of the ramifications of that as my symptoms and my pain levels increase. But I now know why, and for some reason, that knowledge removes its power over me. It’s part of me rather than being something attacking me from nowhere. I hope you enjoy this episode as I share highs and lows and celebrate an amazing diagnostic milestone. Take care Sam xx www.mymedmusings.com #rarediseaseday #Osteopetrosis #cancer