The story of Trena
I was misdiagnosed with Fibromyalgia in rural SE Iowa. The medications for FM made me sicker and toxic. I had lost several organs, surgeries, hair loss, chronic strep for two years straight even after removal of my tonsils as an adult in their 40s was no easy task. It took over a decade to get the correct diagnosis after finally one doctor took the time to listen and did a simple blood test. My diagnosis was such a relief after time and time again being told it was psychosomatic. I started treatment with plasma infusions and the quality of life was significantly increased. However in 2021, I moved back to Iowa after living almost 20 years in metro Atlanta and the challenges once again faced me trying to reestablish care. It has taken over a month to get my port flush, which increases blood clot changes and port failure, and yet have received my infusion therapy creating attacks of virus on my body along with increased fatigue. There is currently no Rare Disease council in the State of Iowa. There is no reason why others like me should go through these challenges or have to drive 2 hours away for better care than what is being offered in the SE region.