Hi, My Name Is Emily… And I don’t know how to finish that sentence. It used to be very easy for me. I was really proud of what I had accomplished in life, and had no problem spitting out my resume for an introduction. Even […]
If you have made it this far, you may be aware I was diagnosed with pulmonary arterial hypertension, PAH for short. After a severe episode making my stealthy PAH obvious, and a heavy let down of a curable treatment option, I knew I couldn’t live […]
1. Having An Autoimmune Disease Does Not Mean You Are “Unhealthy” UNHEALTHY – This word is such a trigger for me. The general population does not understand what it is like to live with a chronic illness or autoimmune disease. I try my best to […]
I’ll never forget the fist time someone told me my symptoms were in my head. It shaped the way I perceived my own body for fear of rejection.
Caregivers come in all forms, and are more than just a medical proxy. No one should fight chronic illness alone. Caregivers need praise too.
Getting a diagnosis of a chronic, incurable illness is a pivotal point in the timeline. A diagnosis seems like the end of the road, the question is finally answered. However, it is really just the beginning of the road. A road filled with scary symptoms, […]
FSGS is a rare and serious disease affecting the kidneys. Here is where I stand one year post diagnosis, and treatments that have helped me.
One year after diagnosis, here’s how I am managing my pulmonary hypertension. I’m not where I want to be, but I’m better than I expected.
CTEPH is a rare form of pulmonary hypertension that results from blood clots in the lungs. Read along as I share my shocking diagnosis story.
For the first time ever, I had to explain what pulmonary arterial hypertension (PAH) was to another healthcare provider. I also had to describe the use of what I thought was a very common medication. I’ve been told this is a rare disease, but it […]