Updates and Diagnoses

Howdy folks!

I know it’s been a while since I’ve updated here. Life has been pretty hectic. I finished my PhD. Defended my dissertation in July, just a few days after breaking both my left arm and my left leg. I was in a wheelchair for 3 solid months because of the leg (no weight bearing) but I’m back up on my feet now and slowly building back up to being able to take long walks.

I also took a research postdoc position at the University of Virginia, where I’m engaged in pediatric research. The projects I’m working with are exciting and they are things I’m intensely passionate about. It’s a new feeling for me, waking up at 5am every morning thinking about my project and delighting in the complexity and the potential of the project to improve outcomes for kids in Appalachia and beyond.

So what’s up with the diagnoses, you wonder? I’m still waiting to find out, actually, but I spent this morning in a room with a specialist who started talking clinical trials and biopsies and delaying the need for transplant. Turns out my liver is showing signs of serious damage. I don’t drink, don’t smoke, I don’t use illicit drugs and I avoid even over the counter and prescription drugs when I can, my cholesterol is abnormally low, and I don’t have diabetes. All those things should be minimal risk, but my BMI is just a smidgen over the 30 cutoff for obesity, and my blood pressure is intermittently high, mostly because of my POTS, making it impossible to treat effectively, so that’s where the risk mostly comes from.

I’m not sure what this will mean going forward, but I know that there’s a long road of living and learning and research in my future. I know that there’s always hope for a well-lived and well-loved life. I know I have the support of my husband and daughter, and that I will work to be as productive as I can possibly be. A diagnosis of a potentially life-limiting disorder doesn’t change any of those things or who I am.

Years ago, when I was waiting to learn more about my broken heart, when I was waiting for a diagnosis and a prognosis and a plan that would let me move forward, I spent a lot of time writing on this blog. I mostly wrote about things other than my health. And it helped. I’m hoping it will help me out now, too.

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