Who knew that revealing to the world that I have Lupus would take me on an emotional roller coaster? I still remember having written the post 4 days before I released it. I would read it every day, and become nauseous at the thought of releasing it. On Friday [August] the 13th, I decided to finally publish it. As soon as I hit publish, I was panicked and tried to figure out how to delete it. Before I could delete the post, it had already gone to my yahoo groups, and emailed to my blog followers it was too late! Immediately my phone started ringing, emails, text, tweets, were all coming in so fast that I turned my phone off, went to the bathroom and cried. I got my composure, grabbed a hot cup of green tea and came back to my desk- 5 minutes later a co worker came over and hugged me [ I forgot that some of my co workers follow my blog] tears instantly started streaming down my face. Friends and followers told me how emotional they were reading the post. Some were so emotional that they couldn’t talk- that’s why they took to text and email. I thought to myself “why were YOU so emotional” I didn’t get it. I didn’t think much more about it, until later that evening when the tweets came in and people were crying and asked if they could forward my post. I found myself getting depressed.
“Why did I write the post” I asked myself over and over. I wasn’t ready to be the face of Lupus- or was I? People started asking me more questions about Lupus. Some had never heard of Lupus and some only knew it as the disease that Toni Braxton has. I started to explain as best I could, provide an explanation for the condition of my skin, and my inability to move sometimes. Most were very compassionate, and then something happened. I no longer was Mz. Sixx or Sixx (mc/sc club name), or Au’Naturale (my Twitter name), or Toni (child hood nick name), I was the helpless natural haired lady with Lupus. People started treating me as if I was sick. I know it was all heartfelt, and came from a place of love- but it made me a crying mess and I felt like a burden to people. Now every minute was about Lupus. Here comes the babying “ how are you”, “are you feeling OK” “sit down”, “lay down” “go home”, AGGGGGGGGHHHHHHHHH!!!!!
I had wanted to make a you tube video with me actually speaking on it, but I felt like I had nothing to talk about [Up until this point I had only created picture slide shows]. Well today was going to be different- I needed to get a few things of my chest. My hand was hurting to bad for me to type- so I came home, grabbed my lap top, sat on the floor and just started to speak. I didn’t edit it, apply music, and make it “cutesy”. I wanted it to be raw- because that’s how I was feeling at the time.
Click Here to watch Video
This experience has made me reflect on who I am. Among the many hats that I already wear, I just added one more – “The Lupie Chick”. I’m realizing that I have to be selfish [in the instance] and make myself a priority. I’m the star on the team of “ME”. Some won’t like it- but guess what? I don’t like having Lupus either [shoulder shrug]. I have to listen to my body and not push myself being what I can handle. I will not give in the “pity parties” that some have invited me to join. I will not be treated like a helpless baby, and I will not hide. I will LIVE and ENJOY my life until the wheels fall off-and all the wheels must fall off before I stop [insert fist pump]!
[climbs off the roller coaster]
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