My Diagnosis of having Stills Disease

Dear Reader,

It was a typical morning where it was still dark outside, the birds were chirping out my window, and the pain in my legs and feet were so striking I whispered to my now, ex-husband: "If it gets any worse, I need a wheelchair. I can't walk." The pain in my joints, my muscles, it affected everything from getting out of bed and walking to typing on the computer. It was too painful. Yet, I looked perfectly normal at 29. What 29yr old has joint problems? Me. That's who.

I went to my physician who simply said I had fibromyalgia. I'm thinking, "nope." I got a second opinion and she asked me: "What do you think it is?" I said "Rheumatoid Arthritis." She thought I had Lupus. I got a referral to see rheumatology. By this time, I am now 30 and just a few weeks pregnant. Of course, no testing can be done while I'm pregnant, so I was told to enjoy my brief remission and I would see him again in 9 months. So, now I'm 31 with a new baby (my then-husband and I are now also separated) and I go back to rheumatology who tells me about Stills Disease and that is his suspicion. I get labs, x-rays, and lo and behold, after much elimination, I received the diagnosis of Adult-Onset Stills Disease. I was told I had a better chance at winning the lottery or getting struck my lightening. I thought, well, if it were not for bad luck, I would not have any luck at all.

It took me until now, at 40, to get serious and dig more into this rare disease as mine is still an ongoing battle. I'm realizing it has been nine years and I have yet to have one conversation on the phone with someone who also has this or knows anything more about it or what we can do to further treatment. I did discover the National Institutes of Arthritis and Musculoskeletal and Skin Disorders is conducting research on Stills Disease. So, I can only do the next best thing and try to raise money for them to help with research. So here I am...waiting for help, answers, and lifetime of gaining knowledge and understanding. Want to join me?

Let's not be alone anymore, let's discover more, together. And truly, let's make the invisible disease...visible. Welcome to my site where we can walk this journey together.

Lots of Love,

Lauren