My name is Rob. I’m 34 yrs old. The diffuse scleroderma has affected every major organ except my kidneys. I was diagnosed with Raynaud’s 4 yrs ago. Nothing really major occurred until November of 1999--major fluid around my heart. The fluid is being kept gone by meds-I think I’m on about 13 different ones. On top of all of this my wife filed for divorce in May 1999. It’s supposed to be final this month.

I found out about a Dr. Daniel Furst at Virginia Mason Medical Center in Washington through a magazine article. He put me on Cytoxan and Prednisone and left all my other meds alone. For the most part I’m doing ok--of course I do have my bad days. I’m getting ready to go on long-term disability and I have applied for social security. I have lost a lot of weight through all of this - from 220 down to 160. I have little strength or stamina. Opening a 2-liter bottle is a challenge.  I can get dressed by myself, it just takes time. I try to eat smaller meals - just more of them. I’m on 3 different meds just to control my GI tract. And yet there are still times when I don’t know which end its coming out of faster (sorry to be so graphic.) Another doctor gave me Stadol nasal spray which seems to stop the intestinal cramping and  spasms.

I could go on and on and I am open to discussing things more if  somebody wants to know. But there’s one thing I’ve been sure of through all of this and that is GOD IS GOOD! HE has been with me all along. I’m not gonna just roll over and die. I’ve got two kids watching me and I don’t want them to see a quitter (or anyone else for that matter.) Most importantly I know GOD doesn’t want me to quit.

Rob - rlwchord@aol.com