I felt it was the right time to share an update on my health journey. It’s been two years since I was diagnosed with dermatomyositis, and unfortunately, the treatment regimen that had been keeping my symptoms manageable is no longer effective. Over the past eight weeks, I’ve experienced a gradual increase in pain, weakness, and fatigue.
Recently, I underwent two MRIs—one of my thighs and one of my upper arms and shoulders. These areas are commonly impacted by this muscle disease and are more clearly visible through imaging. These scans were necessary so that my medical teams in both Evansville and at Vanderbilt could evaluate my condition and determine the next steps. The results confirmed progression of the disease.
I usually gauge how I’m doing based on my ability to stay active, and lately, I’ve noticed a significant decline in my exercise tolerance—something that’s hard to ignore. That prompted me to reach out to my doctors, advocate for myself, and push for better communication among my care teams—an ongoing challenge I’ve faced.
We don’t yet know why my current treatment has lost its effectiveness. Unfortunately, that’s part of the unpredictable nature of dermatomyositis. I’ve also been under more stress recently, which certainly doesn’t help. It’s one of the reasons I’ve stepped back from following the news as closely—it’s simply too draining. I’m giving myself permission to slow down and focus on healing—self-care is at the center of that right now.
The next phase of my treatment will involve IVIG infusions. I’m hopeful this new approach will help stabilize things.
IVIG therapy is a treatment that involves infusing concentrated antibodies (immunoglobulins) directly into my bloodstream through an IV. It’s designed to help modulate the immune system and will be used in combination with one of my current medications.
Because insurance approval can take time, my doctors have made some adjustments to my current treatment plan in the meantime to help manage symptoms as best we can.
Once approved, I’ll begin monthly infusions—most likely at the Deaconess Gateway Infusion Center—which will take several hours each visit. I’ve heard encouraging stories from others who’ve undergone this treatment for myositis, so I’m staying hopeful. That said, like any medical intervention, IVIG can come with side effects, so I’m also praying for a smooth experience, especially in the long run. I’m grateful to work for an organization that values well-being and has made space for the accommodations I need during this chapter.
I’m hopeful that I’ll have more answers in the coming weeks. In the meantime, I’d be so grateful for any extra prayers or positive thoughts as we navigate the insurance process and move toward the next phase of treatment. I’m truly hoping this new protocol brings better results.
More than anything, I’m looking forward to feeling like myself again—being more active and doing the work that gives me purpose. That’s always been the heart of who I am. One bright spot through all of this has been welcoming River Nolan (my foster fail) into my life. His timing couldn’t have been more perfect, and I feel incredibly blessed to have this sweet soul by my side.
I’ll share more updates as I learn more. Thank you for taking the time to read and for continuing to send love and encouragement my way—it truly means the world.
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