A positive message to those living with scleroderma

Hello, friends. I'm new to this blog, but I'm not new to scleroderma. I'm an American who has lived in the UK for over 4 years now. I was diagnosed with scleroderma nearly 20 years ago, but it has not stopped me from living my dream. I am a music teacher with over 35 years of teaching experience both in the classroom as well as through private piano tuition. My "kids" are my lifeline because they bring me so much joy, even on my worst days of not feeling well enough to face the day. I've learned to deal with the challenges that the cold weather here in the UK can cause with flair-ups of my illness, and I know that healthy choices in living and nutrition can help alleviate and minimize symptoms, but it is certainly something that we cannot fully control, nor should we feel alone when we feel the worst. This is an excellent forum to share our thoughts and give each other support. I look forward to hearing all about you and your experiences.

6 Replies

  • Hi, I'm a music teacher too! Some days I struggle with my hands,but we just sing on those days! And yes, the kids keep me smiling. Welcome to this forum and thanks for your positive post.x

  • I've had scleroderma for 25 years & I'm still amazed when I read about all the different symptoms. There seems to be a generally great attitude from nearly everyone, & I think we are a very stoic lot! So I would also like to thank you Neraitha for your positive post. My early years with the diffuse form of scl;. were pretty difficult, but then there was huge improvement in my skin & now I'm making the most of it. In fact, whatever the problems, we tend to just get on with it & make the most of things. Enjoy the music teaching.

  • How true, we are a stoical bunch. I'm an artist and although I have many scleroderma symptoms Prof D still insists on calling it undifferentiated mixed connective tissue disease. Even so called well people, have good days and bad days, we all just have to keep going trying to be the best we can be.

  • There seems to be a several artistic people with scleroderma. I'm an ex dancer who has been diagnosed with diffused, systemic scleroderma a few years ago, although I had the symptoms for several years prior to diagnosis. I totally agree with the the children keeping you going. I now live with mine and it works great for us all. They take care of the things I find difficult like preparing meals, cleaning etc, and I take care of the Grandchildren. This forum is great, makes me feel much better, count my blessings and just get on with things. The only things I miss are the singing (my voice can no longer hold a reasonable note due to my throat closing in) and most of my dancing is now done in my head. Keep the positivity going!

  • Im 24 and had systme sclerosis for bout 9 years now and to be honest seeing these posts gives me hope that its not the end of the world and that there are people, like yourselves, that have been living with disease for so long and are still happy... and kids are just the most wonderful things in this world, my son is the main reason that I have the strength to get up and do things! thanks for the postive posts!

  • I'm SO glad that my positive vibes are reaching out to so many people! I know there are tough days, both physically and emotionally. If we learn nothing else, it should be to feel comfortable in reaching out to others regardless of how we feel. A shared burden is a fraction of the load. Helpful advice is always welcomed here, and shared stories mean so much when we think we are alone in this dismal place. Yes, we really do need each other to thrive, and yes, we really can rely upon each other to help us through the dark times. But the best part is that we forge new friendships that will last a lifetime. Thanks for being here, my new friends.

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