Give Us Information

For the past few days, I have been in Orlando, Florida at the Rheumatology Nurses Society Inaugural Conference. They invited a rheumatoid arthritis patient and a lupus patient (me!) to share their experience of chronic illness. I will post parts of that talk as the days go on.

Please don’t decide for us what we should or should not know. We have to know. What we do with that information is up to us. Do I want to hear that lupus will ultimately kill me by uncontrolled infection, cardiovascular event or kidney failure? Heck no! But I can tell you, if I get sick I don’t wait. I call the doctor. I eat a low, low fat diet. I work out and do cardio four or five days a week. I keep my appointments and have my 24 hour urine test faithfully every three months. An informed patient is a compliant patient. I understand that you don’t want to overwhelm or scare us. We aren’t children. We deserve to know. Yesterday I sat in the luncheon as we listened to treatments for RA. I can’t tell you how emotionally painful that was for me. But I stayed and I learned.