Living with chronic pain can be an incredibly isolating and frustrating experience. For years, I struggled to find a medical professional who not only believed in my pain but was also willing to explore treatment options with me.
After exhausting countless avenues, I stumbled upon Dr. Plokin at Mass General Hospital, who was conducting a quality of life study focusing on Schwanomatosis pain and a drug trial to address it.
I traveled to Boston to visit the neurofibromatosis clinic, wholeheartedly clinging to hope that someone would finally validate my experiences. Not only did they acknowledge my pain, but I also became eligible for the study and the drug trial. And with that, my hesitant hope blossomed into something more.
Embarking on this journey meant flying to Boston from North Carolina every three weeks for appointments and infusions. At first, the infusions provided temporary relief – I felt energized and the pain subsided. However, it wasn’t without its drawbacks. As time passed, I began to experience side effects such as a full-body rash, weight gain, hair loss, and edema. Despite this, the trade-off was a significant reduction in my pain.
Despite facing numerous challenges, I am now in a much better place as the once relentless pain has significantly reduced. Over the past six months, there have been both good and bad days, but I am thankful for the glimmer of hope that emerged from my initial doubts and skepticism. I am currently exploring regular treatments to manage the pain, knowing that this will be an ongoing battle requiring frequent interventions. My journey is only just beginning. Through this experience, I’ve learned that hope can arise even in the depths of desperation. I am incredibly grateful to the medical professionals who are tirelessly working to understand and ease the burden of chronic pain. For anyone else facing similar challenges, I hope my story serves as a reminder to persevere and consider all available options for relief, even when faced with uncertainty.
Stay Strong,
Michaela
