When I asked Vanessa Payne if she would grant me an interview, her first response was “LOL! Wow! Thank you!” She was a bit nervous about it because no one really asks her about her life. They never ask her how she got to be so confident and strong as a woman living with Lupus. You’ll find that Vanessa Payne is just like every other woman who lived through so much turmoil and is now standing tall; making a difference.
We met through an email. She asked me if I would help her raise money for Lupus Awareness in a Lupus Walk. I must admit, I really didn’t know much about the disease so I was more curious about it than anything and I wanted to help someone who has always shown her support for my career. It was only right, and I’m glad I did. I met an amazing woman!
This Sunday morning, as you prepare for your weekend worship service, know that you’re not alone in your storm. God will carry you THROUGH every bit of turbulence only to place you in a peaceful stretch of life (only to go through it again).
As a woman living with Lupus, Vanessa doesn’t let it stop her! Read her story and be blessed.
Where are you from?
I come from a small poor town in upstate NY called Troy (close to Albany).
What don’t people know about you?
My family had a lot of dysfunction, child abuse and physical, domestic, and just plain crazy. My mother was abused for years and years, but after years and years of abuse from the men, my mother had enough. My sisters’ father had been beating so much that one day, she just couldn’t take it anymore! Next thing we know is we’re standing there she pulled a gun out and she shot him in front of us. Needless to say, my life and my sisters and brothers was never the same.
I was on my own at the age of 15. To find work, I lied about my age but I supported myself at the age of 16. A girlfriend took me to the local carnivals and I met a man who traveled with the carnival. He told me that I could stay with him for the rest of my life and I decided to go with him because I felt that he was my escape. So I left and never looked back!
When were you diagnosed with Lupus?
In 2008, I started missing time at my job that I held for 15 years. There was a time that I was bedridden with swollen limbs that hurt so bad. I felt like death! It was a year later when I was experiencing a painful ear ach (this was in May of 2009). The doctor looked at my face and found round purple sores. Then she asked me a quesiton that I would say changed my life forever. She asked “has anybody ever told you that you have lupus?” I laughed at her “What? Lupus?” I didn’t know much about it but to me lupus was a death sentence!!!
After many tests and skin biopsies, it was confirmed that I did have SLE and Discoid Lupus!!!
How difficult is it living with this disease?
I can no longer make a long term plans because I would feel tired all the time. Thing is for me, I would push myself to a point that I would have a flare-up that not only affected my family, my life, my friendships, my job, but my everyday living. It affected my husband and our relationship as well as my relationship with my daughter. There are days that I just couldn’t (and still can’t) get out of bed because I’m just too tired.
I want to sleep but my body aches and my fingers and joints swell up. You’re tired and you’re nasty and you’re hurt and you’re mean and they say you hurt the ones you love the most.
What’s a good day and when was the last time you had one?
I try to make everyday a good day because if I didn’t try, my world would really not be nice place.
What are the biggest misconceptions about Lupus?
When people say “wow you don’t look sick”! People don’t understand that all day long my body on the inside is damaging itself. Like I’m allergic to my own body so in layman’s terms what happens to the inside of a hotel room after a rock star is having a major rock party damage. It’s like my body is having a big rock party; breaking and damaging my insides. Everyday my lungs, liver, heart, emotions, kidneys, and my mind are damaged in ways that you could never imagine! So I encourage people to take a minute and read about The Spoon Theory and maybe they’ll understand how we have to change our entire life on an everyday basis!!
What do you want people to know about Lupus?
Not to look at us as lazy. We’re sick! Ask us about it! Don’t be ignorant and think wow she an Auto immune disease. Live your life to the fullest, but always maintain your number one priority, you.
What are you doing to bring awareness?
I have fundraiser twice a year for lupus. We have a walk with Alliance For Lupus Research (www.alr.org). Last year, 97 people walked with me and helped raise over $11,000 for lupus research. That is my greatest achievement to date. I’m confident that it will be bigger and better next year. We need to find a cure.
It is not a discriminating disease! It affects African American women 3 times more but men and children also get it…
How can people reach out to you?
Know the symptoms of Lupus:
- Fatigue and fever
- Joint pain, stiffness and swelling
- Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose
- Skin lesions that appear or worsen with sun exposure
- Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud’s phenomenon)
- Shortness of breath
- Chest pain
- Dry eyes
- Headaches, confusion, memory loss
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