When I was first diagnosed with Lupus, I instantly took to the internet. I wanted to arm myself with as much information as possible. I was prepared to be over whelmed and immersed in everything regarding Lupus. I was alarmed by the amount of “repetitive” information that was available. Everything was a repeat and very “ text book” . I was clear what Lupus is (was), but I wasn’t clear as to how people lived with Lupus. What a day was like for a Lupie Chick ™. How Lupus affected friendships/relationships/marriages. How Lupus affected people’s mental state. How Lupus affected peoples emotional/physical/sexual health. I had LOTS of questions. I could not find what I was looking for; nothing was really answering what I wanted to know. (For me), I needed visual, clear, concise answer(s). Based on the lack of information available, I decided to write from my perspective and keep it REAL & RAW (no sugar coating). If I was in pain I wanted to describe or show pictures of the type of pain or the intensity level of the pain. I was going to show my bare face (without makeup) and talk about the scares, the nasty remarks, and assumptions people make about you when you have an invisible disease. I wanted to provide an outlet for my fellow Lupie Chicks™ to know that they were not alone and we could cyber space high five each other.
I will never forget my first posting telling the world, I Have Lupus; people were calling me with tears in their voice telling me I had taken them on an emotional roller coaster. I heard from friends I havent from in years (more than 10). It wasn’t my intention to make anyone cry or become upset, I wrote from the heart. I wrote as if I was speaking to my girlfriends or family. I’ve found that my ability to be open and my style of writing works for the type of platform I’m building.
I’ve started posting daily pictures of myself saying Hello /Good Morning to my fellow lupies. If I miss a day, people will inbox me on Facebook or text me and say “where is our daily picture?” I never knew that a simple picture would/could make someone’s day, or provide a little encouragement.
Not too long ago, I received a mention on Twitter that said “because of the Lupie Chick I know more than I ever thought I could or wanted to know about Lupus and the struggle”. I don’t know this young lady, never knew that she read my blog or tweets. I received a message from another young lady telling me “because of your blog I now know how to be a better friend “. I don’t get many (any) comments on my blog, and I wasn’t positive if anyone was reading my blog, UNTIL I get the random messages, text, or tags of people wearing purple, or mentions of “ The Lupie Chick”. Just the other day, my hands had swollen and I was in severe pain. I posted a picture on line and a young lady asks “what’s lupus?” I was in too much pain to type (reply) on my mobile, but I fought through and took a screen shot of the Lupus Foundation page explaining what Lupus is. Even in my mist of a challenge I was able to educate someone on this little known invisible disease. I’m so honored and humbled to be able to do what I do, and I’m MORE honored and humbled to my readers and audience who help spread awareness. I know that I will never stop writing, I will never stop bringing awareness, and I will never keep quiet – This is WHY I Write About My Health!
Until Next Time,
Live ~ Laugh ~ Love
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The information included on this blog is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. The reader should always consult his or her health care provider to determine the appropriateness of the information for their own situation or if they have any questions regarding a medical condition or treatment plan.
Published by The Lupie Chick
I’m a wife, a mother, a grandmother, a sister, a daughter, a friend, a poet, a philanthropist, a member of Sigma Gamma Rho Sorority, member of Order of The Eastern Star, and I have Lupus. I was diagnosed with Lupus in July 2011, after many years of unexplained illnesses, surgeries, and hospital stays.
My Lupus was discovered after a year struggle with a rash on my face that was spreading to my neck and chest. I had begun to also suffer from migraines, fatigue, joint pain (in my ankles and wrist), shortness of breath, and excessive sweating. I knew nothing about Lupus except it was a disease that Toni Braxton suffered from. I initially thought there was a magical pill I could take to get rid of it. I was informed that Lupus has no cure; it’s a disease I will live with for the rest of my life until a cure is discovered. I have dedicated the rest of my life to be a face-IN YOUR FACE- activist for a cure- I'm not hiding it-I'm FIGHTING it!
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