We came across an online blog titled “Me, Myself & Lupus” written by a woman named Emily to help educate the public on Lupus and related secondary disorders, one of which for this sufferer is Raynaud’s. Emily published a diary post on Raynaud’s worthy of sharing, not so much for its facts, but more for how well she expresses her experience with the disorder.
It’s a story most Frosties will easily identify with, but may not do as good a job in describing their symptoms or pain. For example:
“The ‘warming up’ process is extremely painful and on some occasions has brought tears to my eyes. The only way I can think to describe the pain is: when you played out in the snow for hours as a child and then got straight into a hot bath. It is also mixed with pins and needles and my fingers slightly swell…It’s during this time my hands go a bright red, and I mean bright, it’s like someone opened the flood…or should I say blood gates and every blood cell I have is rushing to get to my hands and feet.”
When most of us are asked to explain Raynaud’s, we’re likely to talk about the clinical process of blood vessels shutting down when exposed to the triggers of cold or stress, or describe the pain of attacks. Emily’s initial reference to Raynaud’s is instead rather poetic: “This is the illness that makes me cold, it’s the illness that has given me a love of blankets, fluffy socks and the ability to sniff out any nearby heat sources.“
She also doesn’t pull any punches when describing its impact on her life: “For me, Raynaud’s is secondary meaning it was caused by Lupus. Despite it being secondary and having 3 other secondary illnesses – Raynaud’s is right behind Lupus in terms of torturing me.”
We love the voice Emily uses to tell her story and believe fellow Frosties will, too. Here’s a link to her diary post on Raynaud’s: “Me, Myself & Lupus – What Is Raynaud’s Phenomenon?“