About Me

Like so many, I spent four and a half years trying to convince doctors that something was wrong with me. I was an athlete, I ate extremely healthy, I did everything right...yet I was exhausted all the time, my joints hurt, my muscles hurt and I felt like a constant train wreck! I was constantly told nothing was wrong, I was anxious, I was depressed or just overdoing it in general. About a year and a half ago, I finally got to the point that I couldn't get out of bed by myself because my hips hurt so bad, I was so exhausted I wanted to cry, I felt like I had daggers in my back, I coughed constantly and it hurt to take in a deep breath. My fingers were so swollen I couldn't get my rings on, I had no strength in my fingers to open anything that twisted and I knew something was really wrong that it started to scare me. I went to my doctor and asked her to test my RA Factors since my fingers were swollen and my thyroid since I was so tired. She told me she was going to do a full panel work-up and 24 hours later, I got the phone call. My RA Factors were negative, my thyroid was normal, but my ANA was strongly positive. I was referred to a Rheumatologist and after testing positive for 9 of the 11 criteria and ANA titers at almost 1300, I was finally diagnosed with Lupus. At first I thought they were wrong, then I thought I could push through it because nothing defeats me and then.....reality set in! For the first time there was something in my life that I couldn't control, yet it seem to have control over me.
I've been selling biotherapy drugs for breast cancer for the past 14 years, so once again I thought...at least I'll understand everything about my diagnosis, I have great connections so I'll get the best medical care and I'll breeze right through this.....boy was I wrong!!! It took me several months to see a Rheumatologist, I realized I didn't know anything about my disease or what the 10 pages of lab results meant and it was one of the most difficult and frustrating times of my life! I found that even after my diagnosis, I still had a difficult time with people taking me seriously so I finally decided to take my care in to my own hands. I spent months reading books, researching journals and asking LOTS of questions. I realized, if I'm a medically educated person, I understand how insurance works and I felt overwhelmed and frustrated that no one would take me serious, how frustrating it must be for those that don't have the background that I do! That is what led me to start this blog. Since no matter what kind of autoimmune disease you have, everything seems to overlap whether it's symptoms, treatments, side effects or the emotional side of living with a chronic disease. I'm not a doctor, I'm not the authority on all things, but I'm someone that struggles everyday with my disease. Knowledge is power and I so desperately want to help others in my same position. I want to help people understand their disease, how to take control of your disease of the things you can control, ideas that may help symptoms and more importantly, a place where people feel safe, have support and know someone not only "get's it" but lives it. Let's take this journey together and with each other's support, our disease will never defeat us! I'm with you every step of the way!
XOXO- Lani