Lupus Story: My Journey

My Journey’s Lupus Story

I have always been sun sensitive, would get awful headaches, sun blisters, very ill. My mother would throw me in a cool tub, no AC remember, dry me and lay me on a couch and darken the room. I’d sleep, get chicken noodle soup and a lot to drink. Little did we know, my achy joints, bad lungs, sun blisters were all symptoms of lupus, until my brother was diagnosed with Marfans syndrome. The docs told my parents to have me checked for autoimmune.

Well we didn’t have a lot of money, that was put on hold and it took me ten years to be diagnosed at 32.

I know my parents were fighting poverty, doctors were expensive, my dad had cancer and I seemed healthy, just sensitive. So don’t do the things that had made me ill, be careful, etc. When I’d had my children, my own bout with cancer and ill health forced me to look for answers. Why do I hurt, am tired, can’t go in the sun, etc. At first carpal tunnel, then non-ana rhuematoid arthritis, then lupus like autoimmune, to lupus. I went to psychologists because it was in my head, took drugs to fight the pain, and then it was because I was addicted to meds! A very crazy journey later and I ended up in another state and believe it or not, I had to go through it all again! Even the docs at a well known university lupus clinic argued my known diagnosis and treatment. Frightening to be in a new place, know no one, have all the previous records from Yale University and having a flare and the first thing done was check for pain pills!

My advice is make sure you advocate for yourself. Be that pushy person who knows what’s happening and is aware. Make sure when you go to the doctors, hospital, clinics you have an advocate who will fight for you when you can’t. And because we have a revolving system of doctors, I have them sign my understanding of what they are telling me each and every time. Does it sound like I am suspicious of doctors? No, I just need the information, then and there to get treatment. I wish you a better journey than mine, a shorter journey to a diagnosis, a better treatment journey and hopefully, someday, a cure.