This weekend we got hit with a late winter snowstorm. This blizzard came at us with heavy snow, sleet, cold temperatures and wind, making visibility extremely difficult. The snow just kept coming all day on Sunday and into Monday; requiring Denny to make multiple passes at clearing it to keep up and not get overwhelmed. Just last week we were setting records with 60+ degree weather! The calm before the storm.
As with life, weathering a storm can look different depending on the stage you’re in. Sometimes, if you’re lucky, you can shelter in place and wait for it to pass. But many times, you find yourself right in the middle of it, exposed to the elements and fighting to make a path forward. I find this really similar to my Scleroderma journey so far.
This week marks 5 years since I was diagnosed. It’s a major milestone that I remember wondering if I’d actually hit.
When I was first diagnosed with Scleroderma, we were told that in my case, marked with rapid onset and progression, the first 5 years would be the most difficult. It’s the acute stage of the disease where the body is in an all-out war with itself.
Thanks in large part to the support of my amazing husband, family and friends I’m celebrating this milestone with gratitude that my health has stabilized significantly. It’s not lost on me that many don’t have this gift.
Make no mistake though, the feeling of being on high alert for something new to crop up is never far off. Scleroderma is a progressive disease, and it can be relentless in its pursuit. I know that at any given time, severe symptoms can return, without warning or reason.
By the grace of God, I’ve been able to take advantage of many breaks in the storm. Which prompts me to reflect on the challenges and lessons handed to me these last five years.
5 years… of Scleroderma attacking multiple organ systems. As one thing would start to calm down, another would pop up. Everything seemed out of my control, and it was difficult to see how I would be able to dig myself out.
5 years…of working towards adjusting to the rage and disappointment about the many losses that come with living with a life changing disease including my profession, income, independence and sense of self.
5 years…of becoming acutely aware that the barriers that people living with disabilities and chronic illness face don’t seem relevant unless you become directly affected by them.
5 years…of learning to readjust my mindset and the definition of what makes me worthy.
5 years…of learning and honing the art of self-advocacy, which includes using my voice even when it’s scary, being proactive and staying ahead of potential issues to lessen the chance of unchecked progression.
5 years…of discovering purpose in spite of my pain by connecting with and helping members of the Scleroderma community.
5 years…of leaning into trust in God’s promises and proven track record for seeing me through, instead of sinking into fear of the unknown.
5 years…and I’m still here, weathering the storms and honing the practice of looking for the blessings in each day.
It’s in those blessings that we find hope.
And it’s that HOPE that gives us the courage to keep moving forward.
#WednesdayWisdom
#survivingscleroderma
#sclerodermawarrior
#BeaconOfHope
