Friends and family,

I find myself experiencing a dichotomy of emotions as I write this update because, on the one hand, I feel relief to share the answers that have been found, and yet, on the other hand, I find it infuriating to share the roadblocks I am facing in reaching those answers. Over the past year and a half of being home, this medical journey has been harrowing. There have been more bleak days than hopeful days, and it has been a relentless fight that I am determined to win.

Throughout this journey, I have been passed from specialist to specialist (a total of 13 specialists) with mounting diagnoses. However, I knew a piece of the diagnostic puzzle was missing throughout.

One day, during a routine ultrasound, the technician mentioned that I had abnormal blood flow around my pelvis. I did not let this finding go, as I have had unexplained pelvic pain for years. Finally, this led to a fateful discovery that the blood flow in my pelvis goes the wrong direction and that several of my organs drain blood into my pelvis. This creates pressure and interrupts the blood circulating to my heart and brain. The relief of finally understanding the source of my pain was unparalleled after years of feeling misunderstood.

As it turns out, this finding was instrumental in providing a potential explanation for why my parasympathetic nervous system has been so dysregulated—the blood pooling in my pelvis tricks my brain into believing that my body is bleeding out, which conversely signals my brain to activate the parasympathetic, or fight-or-flight response. Thus, my heart rate and blood pressure were raised to dangerous levels to compensate for the perceived blood loss.

The relief was unparalleled after years of feeling misunderstood. However, that quickly faded when I learned that the surgery I needed to fix this issue was deemed “experimental” by my insurance and denied repeatedly. I felt even more misunderstood when my insurance countered with an option for a total hysterectomy instead—at the ripe age of 26 years old—a surgery that fails to address the problem, which is the veins that lead to the organs themselves.

The surgery I need is not experimental; it is merely that my case is extremely rare. I am grateful to report that my surgeon has fought for me, going as far as petitioning big pharmaceutical companies to donate portions of the procedure—and they have! My surgeon has brought the cost down from $50,000 USD to $9,500 for my out-of-pocket cost since my insurance company refuses to cover it. This alone is a miracle; that is $40,500 coming from strangers with empathy for my case. I am deeply grateful for this support. Praise God!

So, right now, I want to raise this final $9,500 to cover this surgery to help restore my blood flow to proper working order because, in my life, this is not an experimental procedure. This is an opportunity to get out of pain and potentially return to some level of normalcy again—it’s hope after a long year and a half of many hopeless moments!