Have you ever tried social networking sites? I started out with a lupus support group when I first got sick. It took me 2 months to write my first post. I tentatively wrote with a question of which I had a million. I got a lot of responses and immediately forgot about the site. I was sick. I was scared. I was completely overwhelmed. One night I was in incredible pain and I wrote asking for some moral support. The response I received was overwhelming. Somehow I had found the place that would ultimately save my life and my sanity. I made “friends” with dozens of wonderful women from here to the East Coast to the Netherlands to Australia and Ireland too. I learned so much from these women. I learned to be my own advocate when it came to dealing with doctors, how to do research from reputable sites, how to speak up for myself. I lost my best friend when I got sick and I found so many new ones in cyberspace. A few of these women I consider to be my ‘best friends’ and we’ve never met in person. The power of social networking is unbelievable.
I woke up today and realized I couldn’t move my legs. I waited for a while before I got out of bed and hobbled over to take my medicine. Usually within a half hour all of the burning in my legs has subsided, but this morning it was a no go. I realized when I was pulling multiple bottles of pills out of my strongbox, that I couldn’t see the labels very well, and my head felt funny. It feels like my brain is swelling up and I have a new itchy rash all over my body. Chuck called my rheumy who said it didn’t sound connected to what he was treating me for, so I should call my PCP. How can swelling in your head and a rash not go hand in hand with autoimmunity? It could be CNS involvement. So I did what any sane woman would do, I cried. I am in between PCP’s and will be seeing a new one tomorrow for a physical. I decided that I wasn’t going to die and we’ll see what she says tomorrow. Have you ever felt completely abandoned by your medical professionals in times of crisis?