Tonight WORLD LUPUS DAY has come to an end and I asked for support from family, friends, social media friends and followers to wear the color purple today then hashtag #worldlupusday to show your support by wearing purple any of these way; makeup, hair, clothes, nails, or wearing a purple ribbon. Only 7 new people in my life came through for me. No I didn’t think I would won’t break the internet with this request but it would have meant a lot to me if more people would have participated!
Showing support will help bring awareness to lupus and all of us lupus warriors. That means better doctors, better meds with hope that our disease go into remission so we can live a healthy life. If I could see #WORLDLUPUSDAY trending that would be a start. If lupus warriors could get the love and support that cancer patients receive it would be a wonderful thing. I’m not the first person in my family to be diagnose with lupus. We were first introduced to lupus when my mother twin sister died from the disease. She was diagnosed with lupus to late so her complications was to strong for her body to handle. Doctors didn’t know what she had and didn’t have the right meds to give her. I’ve been living with lupus for year and it took many many trips to the doctors office and ER before being diagnosed. I was told so many things, that I didn’t look sick, I must be depress, that my symptoms could not be true because I was African American, that I need to make friends, that my job stressed me, my lifestyle of traveling with my job was the cause, that I was fat and getting old, and that they just couldn’t help me. The list of insults went on in on from doctors. So I lived in pain for years because those doctors weren’t educated on lupus.
Every day I feel like I have a horrible flu that’s just one feeling. I feel like I’m on fire a lot especially during the summer. I feel like I’m about 90’s year old. My bones are so delicate when it’s cold or the AC is on my bones feel like their breaking. I have blood clots if I sit to long in my legs. I have chest pains daily, it hurts more when I walk to fast, pick up my makeup kit or walk upstairs. I have kidney problems, an enlarged heart, my arms, wrist, back, knees, and feet are swollen daily that’s another type of pain especially if I’m standing. By 7pm my body start to shut down. I suffer with hair loss in you know how vain I am that it messes with me when I see my hair on my pillowcase in the morning or I see clumps of it when I shower. Now I’m having problems with my lungs. Last year I was told that I have asthma so I use my inhaler almost every day because my lungs are weak. My bedroom look like a hospital with so many breathing machine I need to use. Then recently due to taking prednisone for too long I had an ulcer. The medicine was eating my stomach lining so I am now off of one medication but was given another. I am so happy about that because prednisone was making me look fat, you know that sick swollen look. I was doing treatments every Monday and now I’m no longer so I am blessed for that. I could barely drive myself home all I wanted was to crawl into bed. It was rough but I did it. I do freak out a lot when I’m doing makeup on a sick person, the funny thing is lupus warriors are not contagious but unfortunately you are to us. Our bodies are so weak that it can fight off those viruses so it usually lands us on bed rest for days or the hospital.
I’m going to continue to fight in bring awareness to lupus by writing on my blog, talking to the media, speaking at events, writing a book about living with lupus, you name it. All lupus warrior’s doesn’t have the same symptoms and lots have it worst then me. We shouldn’t have to be a celebrity or a reality personality to get support for this disease especially from family and friends. Let’s show the government the power we have by talking about it, or tweeting about it. I need your help, we have to start from somewhere. So that’s why I asked everyone I know to support by wearing the color PURPLE for me! One day I will see purple everywhere on World Lupus Day.