Dealing with a Scary Medical Diagnosis

I popped abnormal on a blood test this summer. It took two months for the doctor to say “I think you have this (which I found after five minutes of googling), but I’m not willing to diagnose it, go see a rheumatologist.” Two months to see him, to hear, “I want to make sure. So I’m going to run 9 vials of bloodwork to make sure of what we think we already know.” A week later I get a call “you have what everybody thought you did. But it’s a big concept, so we’re mailing you information on it. And he said ants to see you at the first available appointment.” I don’t ask questions, deliberately don’t look things up, and when the information gets here, it’s a single page print out of the generic information I found on the board of rheumatology’s website 5 1/2 months ago. The visit was three weeks out and now my whole brain is on the “HOLY FREAKING CRAP!” train. I see him next Thursday and I want to be smart about this. Scleroderma is a broad frickin’ diagnosis. Prognosis ranges from scary numbers about survival rates to them telling the patient to wear socks all the time. I want to ask the right questions, understand, but my brain is so freaked out I don’t know where to even begin. This is on top of chronic pain issues and a neurological disorder. I feel so alone and all I want to do is scream.