Soon after giving birth to her second child 12 years ago, Mary Vezzetti noticed odd color changes in her fingers – a typical sign of Raynaud’s phenomenon. “It didn’t hurt at all. It just looked weird,” recalls the 42 year old Wisconsin native. “I actually thought it was kind of cool, but that’s it.”
During her annual physical a few months later, Mary mentioned her perplexing symptoms to her doctor. “To my surprise, she started asking a few questions and then told me that I had Raynaud’s phenomenon,” Mary recalled. She ordered bloodwork, including an ANA (antinuclear antibody) test. From there we were better able to diagnose what kind of Raynaud’s I have.” The bloodwork indicated she had “secondary” Raynaud’s, meaning the condition was related to a more serious underlying disease. Mary’s doctor referred her to a rheumatologist, the specialist in Raynaud’s and related diseases. Her diagnosis was limited scleroderma, sometimes called CREST syndrome.
Before long, the color changes and painful throbbing typical of Raynaud’s episodes began — not just in her hands but also in her feet. It has gotten progressively worse over time – in frequency, length of attack, and pain.
“As my Raynaud’s got worse, I declined invitations to football tailgates, early spring baseball games and even sledding and building snowmen with my kids.” Not content to sit out the fun, Mary decided to take a proactive approach to finding ways to maintain her quality of life. “I immersed myself in trying to find out more about Raynaud’s and to search for helpful treatments. The Raynaud’s Association continues to be my favorite site to find practical and factual Raynaud’s information,” she notes. There is just so much information on the site!”
Mary documents and shares what she has learned about Raynaud’s on her own website and social media feeds (www.stayingwarmwithraynauds.com). She has over four million views on her TikTok account, where she shares time-lapses of what Raynaud’s looks like, as well as some warming tips and tricks.
Her advice to other Frosties? “Make sure you have a good doctor, stay vigilant in monitoring your condition and search for support where you can find it. There are some great support groups on Facebook. Ask any question and you are sure to get advice from fellow Frosties. And experiment with different warming devices – heated hand warmers and socks are my personal favorites,” she says.
“Because there is no cure as yet, I want to show people that with a few changes and a bit of preparation they can still enjoy all the things they love,” she says. “I’ve taken on the onus of figuring out ways to still participate in all the fun, even if you have to dress differently, take more breaks and head inside to warm up.”
Educating non-Frosties still is a challenge, though. “When Mary tells people she has Raynaud’s, many don’t know what it is, or don’t fully grasp that it is a serious condition and very painful. “People just think you are cold. But over time my family and closest friends really do understand and want to make sure I’m OK. My husband is my biggest supporter—always making sure the car is warmed up, giving me his warmed up jacket, and reminding me to take my hand warmers and heated socks when it is cold out.”
Moving her family in recent years to a warmer climate in Tennessee hasn’t helped as much as she’d hoped. “I’m still just as susceptible to low temps and temperature fluctuations,” she notes.
As a marketing specialist for an insurance company, Mary considers herself lucky to be working an office setting and not exposed to the elements. “The greatest threat is the air conditioning! You wouldn’t think it would be that big of a deal, but when they keep the office at 67 degrees, you’d be surprised just how cold that really is for someone with Raynaud’s. I’m now able to work from home and it has been sooooo much better! I’m able to control my own thermostat, use a space heater, wear heated socks and even sit in a sunny spot while I work.”
Despite the continuing challenges of Raynaud’s, Mary maintains a positive attitude. “I think life is what you make of it. And a ‘can do’ attitude will take you far,” she concludes. “This world is an amazingly beautiful place, and I want to get out and enjoy it – even in heated gear.”
These profiles are part of our ongoing Member Spotlight series. For more information about our Member Spotlight feature and stories like this one from Mary Vezzetti, here’s the original post: Introducing Member Spotlight! To tell us your story for possible publication, please share it on our Tell Us About You Form.
