There are some of us around here who have still managed to tread on the "lucky" side of diffuse scleroderma. The big trick seems to be making it past the first three to five years without severe major organ involvement. Some of us were on plaquenil or other disease-modifying drugs, apparently just in the nick of time, or perhaps we just happened to lapse into remission.
But I've always been happy just to have things properly diagnosed. They can only threaten us with terminal illness so many times before it loses its luster or even its sense of imminent threat. After we become innoculized to that, I think the correct diagnosis is more a matter of it feeling right -- sort of like when you finally try on the perfect outfit for a special occasion, and it just plain fits. It feels right. And it gives both us and our doctors solid ground on which to make testing and treatment decisions in the future.
I have to confess to being a bit of a renegade, once the diagnosis issues were largely settled. I felt that the playing field tilted then, and I became much more questioning whenever more tests were suggested and much more hesitant to try any new treatment just because it "might" work. I also started focusing a lot more energy on enjoying life today and figuring out inexpensive ways of adding frequent doses of joy, such as eating on the patio instead of indoors -- same effort but more joy.
There is something about having the right diagnosis that frees up the goal-setting part of our mind to enjoy more of life, since a portion of our mind is always set on the diagnosis issue, no matter how well we deal with it or fight against it, when we know our current diagnosis isn't the perfect fit. So I hope this allows more joy to flow into your life, so you can make the very best of life today and let tomorrow take care of itself, somehow.