Like many others with Raynaud’s phenomenon, Ashley Jade Spivey discovered that she had the disorder through a circuitous route.
The 24-year-old native of West Virginia says she always had “circulation issues,” but didn’t investigate the cause of her pain until two years ago. While on vacation with her boyfriend, she felt dizzy and lightheaded, blacking out and going into convulsions. “I was burning up on the inside of my body, but on the outside, I was so cold my arms and legs were turning purple,” she recalled. After similar episodes, and visits with several doctors who were baffled by her symptoms, one doctor told Ashley she had Raynaud’s disease.
Although it was a relief to finally get a diagnosis, tests later revealed that the prevailing issue was Type 1 diabetes. Ashley does have Raynaud’s too, but the convulsions, blackouts and such were attributed to the diabetes (Raynaud’s is not known to cause such manifestations). Being on insulin has, coincidentally, lessened the severity of painful Raynaud’s episodes – but her resolve to educate others about Raynaud’s has remained strong.
“I got very little support from my doctors for my Raynaud’s,” Ashley says. “One rheumatologist told me the pain was in my head. He said I wasn’t trying enough to feel better.” At work as a veterinary technician, she also encountered an indifferent attitude. “I had to take many days off when my symptoms were bad. My boss was not understanding, so I had to leave my job,” she adds.
Ashley parlayed her frustration into a constructive endeavor. She searched the internet for Raynaud’s information, finding support from the Raynaud’s Association. “The Association answered all my questions and gave me a lot of resources to deal with everything I was experiencing,” she says. “I became a woman on a mission to help others with Raynaud’s.”
Ashley formed her own Facebook page to spread awareness about Raynaud’s. With help from the Raynaud’s Association, she sells merchandise from the Association along with t-shirts, hoodies and other items she’s created to educate and empower others with the disorder. She also sells her items in the Etsy store online.
“I’m feeling so much better now, mentally and physically,” Ashley concludes. “It took awhile to find answers about my health issues, but I now have things under control. It feels good to help others, to pay it forward.”
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