After years of living a healthy lifestyle, Aimee Ackell said, she woke up one morning and noticed something wasn’t right.
“My legs were the size of bowling balls and my hands and feet were swollen and I couldn’t move,” Ackell said. “I was in so much pain and agony.”
That day, Feb. 6, 1996, at age 30, she was diagnosed with lupus, a chronic, autoimmune disease that can damage any part of the body including skin, joints and internal organs.
“It just hit me. I mean with some people it evolves slowly but with me it hit me right away,” she said. “Afterwards my body was constantly aching and I was losing my hair.”
Ackell, who later spent several years in Port Washington teaching English to a Russian family, said she did not talk about her struggle with the disease for many years.
Now, 18 years later, she is finally feeling healthy again and decided to tell her story in a book titled “Butterfly Girl: My Lupus Journey.”
“It took me a long time to come forward, but now I’m ready to come forward because I’m feeling really well, the healthiest I’ve ever felt in my life, and I want to share the message with everyone,” she said.
Ackel said growing up she was a gymnast and considered herself to be in good shape and always active, but was aware lupus ran in her family. She said her sister, Ann Corredy, died from the disease.
“The irony in my story is that my sister died when she was 30 and I was diagnosed with it when I was 30,” she said.
Ackell, now a substitute teacher for Great Neck Public Schools and North Shore Public Schools, said she had to change up her diet to include more water, fruits, vegetables and protein.
She also stays away from bread and sugar and exercises often to help with the inflammation in her joints that lupus causes, she said.
“I do some form of exercise on a daily basis,” she said. “This allows me to reduce the amount of inflammation in my body and is essential. Exercise makes both my mind and body harmonious. It’s key to do when you have an autoimmune issue. The types of exercises that I do are cardio, core, swimming, stretching and walking.”
Ackell said the book is about her lupus journey over the last 20 years. The main goal is to help and educate people who have the disease or have been affected by it, she said.
“My passion about the book is that I’m trying to help people who have lupus and people who don’t have lupus who are just people who are facing a challenge to understand that life is a journey not a destination,” she said. “I wanted to educate the world about lupus. No one knows anything about lupus and every time someone asks me what disease do I have and I say I have lupus their face drops to the ground because they don’t understand. There’s no knowledge out there.”
Ackell said she took a class at Nassau Community College to learn how to format the book.
With the help of her professor and an online program called CreateSpace, she was able to format the book on her own exactly how she wanted it.
She said she came up with the idea of putting a butterfly on her face in her cover photo as a way to stand out to those who suffer from lupus.
“When you have lupus you get a butterfly rash along your face and so I wanted that to stand out to people who have lupus because they’ll understand that but also because I feel like I’ve come out of my cocoon,” Ackell said. “You know when a caterpillar grows its wings into a butterfly and they reach out and fly away, I feel like I’ve flown away from all my sadness and now I’m getting to my happiness period.”
She said the whole process of writing and publishing her own book with less than 100 pages took a total of two and a half years.
Her book is now available on Amazon.com in hard copy and as an e-book for $11.95.
“My main goal is to help people be able to have a platform to stand on and where to go so they can have a positive experience with their illness because I feel that as long as you have the right path to go down and you live in the present moment, that’s the most important thing is you should live in the present,” Ackell said. “I wasn’t living in the present I was always worried about my future and i also believe that human beings have to honor your struggle and once you honor your struggle I believe it turns into a blessing in your life and I feel that’s what happened to me. I wasn’t honoring my struggle and now I’m honoring it and now I’m having all these blessings now.”