I stopped by my You Tube account the other day and I’m glad I did. I got a message from Chandra, (theleepchatchannel), telling me about her new campaign for awareness. It’s called LEEP for Lupus ™. I really liked her video that described what lupus was. If you’d never heard of lupus, her video is a great explanation of it. I really liked the video and I know a couple of people that would benefit by watching this video. Sometimes it takes hearing about it from another source for people in your life to ‘get it’. Check it out!
It’s hard to believe another year has blown by and it’s March and with that the LFA’s Advocacy Day. This time last year I was under the impression that I had lupus. All of my symptoms were ‘lupus-like’ (still are) and after my first blood work came back with a positive ANA, C reactive protein, and sed rate, my primary care doc called me and my hubby in and told us that he was sorry and that I had lupus. I will never forget the look on his face or everything really. The complete quiet after he said that, the smell of his office-antiseptic and mint, the clock ticking and my own breathing. After leaving his office, we both broke down and cried.
It’s been a long road since the day in his office. I’ve learned so much. The very first thing that I learned was one +ANA does not a lupus diagnosis make. Since there is no one test to verify lupus and a lot of autoimmune diseases have the same symptoms or overlap, it’s pretty tough to get a firm diagnosis quickly. I read and read and read, anything and everything I could get my hands on. I found a good online support group for lupus patients and also people who were waiting a diagnosis. I learned more from those wonderful people than I did from any article. After getting online and finding the group, I started reading blogs of people, usually women, who were living with SLE. I started tossing the idea around in my head to start this one. I ‘met’ so many absolutely amazing women and men while I was on my quest for knowledge straight from the source, the people who have it, I was awed by how open and truly helpful they all were.
I found one blog written by the husband of a lupus survivor (warrior, pick one, lol). His blog is different in that it comes from the perspective of the other half of the team, the well one. All of the frustrations in dealing with doctors and tests and being a husband and watching your wife suffer. With no cure. And with all of the other things that come along with living with a chronic illness that’s sneaky, cruel, and painful.
I was cruising my blogs and saw this post that Jeff wrote about Advocacy Day in DC. Stop by his blog and have a read. There are some cool tips on what we can do to participate even if we are not in DC today.
Until next time