It's been a long time since I've sat down and wrote in this blog. For the past 2 years I've been very lucky. I entered a drug study for a potential new RA drug called CP690-550 or, as it's better known as now, Tasocitinib. For me and the others in my study group, this drug has been extremely successful. Given this positive reaction and success, I began to feel like I didn't belong in the RA community anymore. I wasn't able to relate to what others were going through anymore. I felt horrible talking about my improvements when others were clearly not in the same place as me. I actually forgot that I have RA. That's how good this drug is. Oh the occasional flare would happen but nothig I couldn't deal with by taking some Advil.
Lately the flares have been coming more and more. But as usual I ignore the reason why. Even on really miserable days like last week when I couldn't eat because my jaw was so inflamed. I couldn't even swallow water. But I still pushed it out of my head that I have RA.
Yesterday I found out that the owner of one of the blogs and a Facebook page I read regularly died. I don't know her real name or where she is from. I don't even know what she looks like. I only know her, as many of you do, as RA Super Bitch.
RASB was one of the first blogs I started reading after I was diagnosed and discovered how helpful the world of blogging could be. RASB made me laugh. She made me cry. She made me feel safe complaining. She showed me it was OK to be angry because I got dealt shitty cards. But she also showed me I could be strong.
I never thought that the death of someone I didn't know could affect me so much. It's been dificult to not cry when I think about her. but then I realized that I did know her. She bared her soul to her followers. Her death has made me realize more than the occasion flare that I do still have RA. No matter how good I feel, that can change at any time. My life is still affected by this shitty disease. I could still die from this shitty disease.
I need to remember who I am and what I've been cursed with. I need to remember the community of unseen faces and unknown names who helped me during the most difficult time of my life.
RA Super bitch, you will be truely missed my friend. You were an inspiration to all of us. You have left your mark on so many people. You were a powerful piece of positive. Despite your own pain and suffering, you were a bright light for me and so many others. You showed me it was ok to bitch once in a while because I earned that right. Your memory will always be in my heart. I will carry your spirit in my soul. I will remember you and what you faced every day whenever I feel the need to feel sorry for myself. I bet you're making God smile now sister!
Peace my sister,