I’ve been through a lot since I was a baby. I’ve come a long way with this disease, and yet I’m STILL fighting. I never got to have a normal childhood due to being in hospitals all the time. All I wanted was to go to camp like a normal kid. As I got older, the disease died out for awhile and I thought I was free. Fat chance. It came back stronger than ever.
I’m steroid dependent and have been on this monster drug for 18 years. I lost a lot of friends due to it, but I also picked up many. I’ve raised money numerous times for NephCure, and plan on continuing to give. I love mentoring newly diagnosed kids and their parents. No matter where they are at or what the outcome is, they are loved by many and we are always there for them. I would LOVE to be a counselor and help others understand this disease.
I’m nowhere near the finish line yet, but I refuse to give up. I never look back, darling. I focus on the WIN. Reach out to your supporters. You can’t do this alone. If you feel a flare-up coming, get help ASAP. DO NOT WAIT. I did once and gained 30 pounds of fluid in three days.