Three years after receiving the life-changing diagnosis of scleroderma at age 40, Monika Hilton was officially diagnosed with Raynaud’s secondary to scleroderma as her primary ailment.
Monika’s journey to understanding her medical condition was lengthy and involved multiple referrals and several series of tests. Initially, doctors didn’t fully grasp the seriousness of her symptoms, but as the condition worsened with scleroderma-related issues, they took a more proactive approach once they connected Raynaud’s to the underlying autoimmune disease. Seeking information through scleroderma support groups and online resources helped Monika in understanding the connection between the two disorders.
Raynaud’s, along with scleroderma, has significantly impacted Monika’s everyday life, forcing her to give up her career as a chef due to the difficulty of working in cold environments, handling cold ingredients, or even holding utensils. Outside of work, she had to stop enjoying cold-weather activities. However, with a supportive family and friends (especially her husband who’s been her rock!), plus lifestyle adjustments, medications, and products like heated gloves, hand warmers and CBD salves, Monika manages her symptoms and tries to stay ahead of her triggers.
Cold temperatures and stress are the key triggers for her Raynaud’s episodes, with anything below 70 degrees capable of setting off an attack. The condition primarily affects her fingers and toes but can also impact other extremities like the nose and ears. Keeping these areas warm with gloves, hats, and scarves helps, but it’s a constant battle. Despite living in a generally warmer climate, year-round air conditioning presents challenges even in the warmer months.
Maintaining a positive, proactive approach to coping with Raynaud’s and scleroderma is attributed to Monika’s strong faith, family, and determination. Advocacy work and a belief in facing adversity head-on help her find strength in supporting others and spreading awareness.
Monika’s advice for others facing similar challenges is to never give up. Be your own advocate, stay warm, seek support, and find joy in the things you still can enjoy. Despite the life-changing impact of her disorders, she won’t be defeated. Monika has found new passions like art to help her cope and navigate through the challenges posed by Raynaud’s and scleroderma.
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