30 Days of PH: Power In Vulnerability

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by Colleen Steele |

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Day 21 of 30 Days of PH⁣
Topic: Power In Vulnerability

This is Gerry’s Story @_gllangan  

When I was diagnosed in September 2018, I had severe IPAH and severe congestive heart failure. I was put on an IV infusion pump with Remodulin and it was downright intimidating. I began seeking out other people who had PH and searched on the internet for as much information as possible.

I was met with a community who, for no fault of their own, had a very doomy and gloomy outlook. Many of the PH groups that I joined were so scary that I had to remove myself and hide notifications from them. The information that I found on the internet was terrifying– with words like “terminal”, “progressive” and “life-expectancy” meeting me at every turn. I felt overwhelmed.

Here I was, a new twin mom and military wife, newly diagnosed with a severe life-altering condition. All I wanted was hope. I started sharing my story to combat the negativity, and that was when things began to change. At first, I was sharing my story with my friends and family. It was easier to notify people of changes via social media, but what I found once I started posting vulnerably was completely unexpected. 

My people start coming out of the woodwork, other Phighters who had the same experiences as me, same positive outlook, and the same desire for hope. The Phighters that I have met in the last two years have made this journey worthwhile. They have shared their stories, their fears, and have been so helpful throughout my own journey. They have given me so much hope and so much inspiration, and I hope that I have made as much of an impact on them as they have on me.

Now I am advocating for PH warriors to share their stories, and not be scared to advocate for themselves in the doctor’s office. On Instagram, I’m vulnerable, honest, and most of all positive. I have PH, but PH doesn’t have me. Since starting this advocacy journey, I have been asked to be on advisory boards, attend conferences, and share my stories across multiple different platforms and blogs. I am honored to represent this PH community in this space. PH altered my life, but it has given me so much more than it has taken.

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