Launching on World Scleroderma Day!!!

Today is World Scleroderma Day 2024, and it is the birthdate of my blog. I have always loved reading and writing, and I spent much of my childhood lost in stories of far-off lands. I was constantly in trouble for daydreaming during class. Or talking in class. Or playing in class. There are so many stories in my head, and I wanted so badly for everyone to hear about them and re-enact them! I haven't changed much since my days as a little girl standing in the corner of the classroom thinking about how to play out the story at recess - I mean, how important it is to not disturb others in class. I still have a head full of stories and thoughts and dreams. What I no longer have, though, is strength. My body deteriorated very quickly when I first got sick. It took years of trying new treatments and rebuilding muscle just to regain a small amount of my previous ability. Some times I move forward, and some times a flare causes me to fall back (literally and figuratively). I spent the first year after my diagnosis fighting to get back to my old self, always striving to meet my self-appointed milestones and then fight towards reaching the next one. It took me a long time to realize that it was doing more harm than good. I was striving for a linear path, and the end result had to be restoring my health to the point it was at before I got sick. There was no other option in my mind. I now know that I need to accept the twists and turns of this path, and that the end result is me living as healthfully and happily as I am able.

I am often told that it sounds like I am giving up. I think those who are on a similar journey know that is not the case. My goal is different, but my effort and determination are the same. It was very hard learning to accept the fact that the life I knew was gone forever. That I might not live as long as "average". That I will miss out on some of the most precious moments of life because my body is attacking itself. No, I'm not giving up. I wanted to, but I'm not. Instead I'm moving along the direction of this meandering path, sometimes straight and sometimes curlicue, with the determination to create a beautiful new life.

One part of my life has ended, one part is on hold indefinitely, and one part was born today. I hope to have many stories to share with you on this new journey!

Wherever you are in your own journey, I hope today brings you closer to the path you wish to be on!