Rare Disease Days of Yore

LOL, I don’t know. 🙂

So, what was it about this RDD that was different? Why didn’t I feel as empowered as years past? Why didn’t I find something to do? Like in 2015 when I organized a fundraiser at a local gym? Gosh, I wish I knew. I don’t want to lose any steam ever on being a voice for Cowden Syndrome and Lhermitte-duclos Disease. But what gives? I really need to try to figure that out.

I have a hunch but will do some deeper pondering about it.

Yesterday I spent a very lazy day at home. My family was here, and we were watching old VHS movies from my high school days (very surreal!). I found myself just doing what I could to stay present. Remembering what I could from high school. Seeing and hearing my Dad on a video was such a shock and joyful moment at once. (He’s passed away)…

Even as I am writing this, I realize (finally?) that any day can be Rare Disease Day and I have the control! I suppose one of the things I am grateful for oddly enough post-diagnosis is that I have found my voice to advocate for myself. I never knew I needed it; but here we are and I CAN DO IT.

I didn’t think about anything health-related yesterday which is pretty damn awesome in my book. No brain surgery or hysterectomy memories, no “day-dreaming” of what my life will never be.

I just was.

With my family.

Safe.

And, I guess I couldn’t hope for much more than that.

Happy Sunday to you and yours.

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