When I had my open-heart surgery to repair my aorta back in the summer of 2014, I did not have many questions. I wanted the process to be over as soon as possible and I trusted that my surgeon, Dr. Craig Miller, and my cardiologist, Dr. David Liang, would be able to make that happen successfully.
Topics: Marfan Community, Living Successfully, Quality of Life, Healthcare Management, Medical Management, wellness, Surgery
When I came to work for the Foundation in 2016, I was the first full-time employee with Marfan Syndrome. Originally, I worked mostly in the office, then part-time at home, and now I am fully remote as I moved to Kansas City, MO back in April. My transition coincided with the work-from-home movement that was made necessary by COVID-19. Like the Foundation, in a time of social distancing, more and more businesses are learning the value of remote jobs for their employees. While many people thrive working in the office, I have experienced first-hand how working from home has so many benefits, especially if you have a chronic condition. I believe that for those of us with chronic conditions, remote work is so much more than just a job perk. It’s a professional lifeline. How so? Here are my ten benefits to working remote with a chronic condition:
Topics: Quality of Life, Tips, self care, Work from Home, wellness
I like to think that I’m a fairly positive person, especially when it comes to my Marfan diagnosis. It has taken a long time to get here. Not every day is a good day, but, overall, I see my Marfan diagnosis as something that benefits my life. Then there are my bad days. They are filled with joint pain, migraines, and sometimes the inability to get up out of bed. We all have our bad days physically, but we keep going because that’s our life.