After years of hip pain and skin rashes since birth, and the determination to find out why I had pain in my hips all the time, felt so fatigued, and did not feel “normal” especially to be in my twenties, I was finally misdiagnosed with a form of spondylitis in 1997. Fortunately this misdiagnosis, put me on the path to getting treatments that would still help with the intensity of my psoriatic arthritis and ankylosing spondylitis. I was finally correctly diagnosed with ankylosing spondylitis in 2007 and psoriatic arthritis in 2019.
This journey has been an on again/off again challenge to say the least. But the gift of having spondylitis is how it has humbled me and made me appreciate the smallest things in life. Though living with spondylitis is a journey that I would not wish on anyone. During the worst of my flares I have had to learn to focus on surviving the current moment with the hope that the pain would subside by the next moment. I suffered many years of pain while I was a single parent.But thankfully I still managed to raise my only child by myself since she was only two years old. However, I often had to rely on her to assist with my care during the times that I could barely walk, when she was too young to even care for herself.
At this time, I manage my AS with a biologic, a few other prescriptions, vitamins, a diet that includes a lot of vegetables (I am not vegan) and doing my best to keep a positive attitude as much as I possibly can.
I wanted to start this support group for a few reasons. First of all, I have a strong family history of spondylitis. Plus there are a number of us here in the Triangle area that have spondylitis. My hope is that we can all come together and share our experiences; comfort and support one another; and grow together in our knowledge about our treatments and lifestyle choices. Secondly, I do not think that anyone should suffer in this spondylitis journey alone. All new patients deserve a place to go and to have a strong support system. My goal is that the RDU Area Spondylitis Support Group will be an integral and comforting part of that support system.
Minionette is from Goldsboro, NC, but has spent most of her life in Raleigh NC. She currently resides in Durham NC.She loves animals and spending time with her cat. Spondylitis has forced her to keep her social life relatively simple. She is on a journey to pour her heart into advocating for spondylitis. She works full time as an Administrative Assistant for a local university.
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